Have you been misled...? // What is PACE? // Medical Scandal [CC]

#LovelyPeopleMerch: bit.ly/LovelyPeopleMerch
My previous video on Chronic Fatigue: • What Is Chronic Fatigu...
Jenny's fantastic blog post about her experiences: tipsforme.wordpress.com/2016/...
Current NICE guidelines: “1.6.2.4 Cognitive behavioural therapy (CBT) and/or graded exercise therapy (GET) should be offered to people with mild or moderate CFS/ME and provided to those who choose these approaches, because currently these are the interventions for which there is the clearest research evidence of benefit.”
Further reading:
The ME Association's medical adviser Dr Charles Shepherd, Hon. gives a critical commentary of the PACE trial: goo.gl/DAQSv2
Article in STAT, health and medicine journal: goo.gl/ohNNYL
Action for ME's summary of the PACE trail Westminster debate: goo.gl/Rwzx3B
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[@ojiverdeconfleco]

As a psychologist I cannot stand other professionals using "psychosomatic" as an actual diagnosis. And in the rare cases that the cause lies extrictly within the mind, it does not in any way overrules the fact that it affected the body in a way that NEEDS to be treated with medical care, psychoteraphy alone cannot help in those cases (and, depending the approach and timing, it can be harmful). As professionals we need to always listen to the person and their suffering if we really want to help, especially when the health system becomes dehumanized.

[@kpwxx]

ojiverdeconfleco Yes, this, so much!!! Not for ME/CFS but there are conditions which can be rooted in mental health but still result in very real pain and other physical symptoms. It really annoys me when people say "It's all in your head" as if that's an answer, like the patient can just go "Oh right, I'll stop that then!"; It's so often used as a put down, like they are saying "You aren't *really* ill because it's in your head" or that because it's a mental health issue you're choosing to have it.

[@AnnikaVictoria24]

🙌🙌🙌🙌🙌

[@edavis7740]

Honestly, this. Hearing "It's all in your head!" for years has been so shitty. Like, okay, the pain is originating in my head... so what am I supposed to DO about it? No one ever told me.

[@me4901]

Thank you for speaking about this.

[@olgachronics3273]

Yes, so much! I do psychotherapy, and have been doing it for 5 years, because it helped me deal with my anxiety. But about 7 months ago I started feeling symptoms of Fibro, and have been diagnosed with it in February. I was a dance student in and had a very active lifestyle. Although no one told me it was all in my head ( I heard other gems though, don't worry) I kept looking for doctors who would actually test and figure out what was wrong. And in the end I found them and I trust my doctors now. And I will say that keeping on with my psychotherapy has really helped me deal with a chronic pain condition in a more positive mindset, and has generally helped me stay away from Depression (such a common "symptom" of Fibro) and return to my anxiety days. It also helps me sleep a little better, because I have learned to cope with the negative thoughts, and have learned to handle that better. My therapist also helps me manage stress which is such a horrid symptom trigger for us with Fibro! HOWEVER it has not cured me! I believe that people should generally do therapy at least once in their lives, but especially those of us who don't have the chance to have a normal active life, because it is so hard mentally to deal with a chronic condition, and it's okay to ask for help. But it does not solve all our problems. And I have, through trial and error, learned not to mention my mental health journey to Doctors - a few years ago I had an "epileptic" episode (I don't have epilepsy) and went to a neurologist, and because I mentioned anxiety related stuff, he immediately decided all I had was a Panic Attack, and that I should see a Psychiatrist to go on depression and anxiety medication.. It's sad when Doctors only care about their speciality and try to disregard people's symptoms.. But we have to keep fighting to receive the treatment that we deserve!

[@instantgr4tification]

When I had severe depression in my teens, I was told exercise would help me to feel better. Every time I tried to exercise I feel so drained and horrible and some days couldn't get out of bed. I found out later with a blood test that I had both Ross River Virus and Glandular Fever and was suffering from chronic fatigue related to that. No one thought to test me or treat my physical symptoms due to my psychological diagnosis. It's so frustrating!

[@Marcylala]

My mom had fibromyalgia, rheumatoid arthritis, hypothyroidism, and sciatica. She was working on her doctorate in psychology and had a 4.0 all the way through to this point. She had been experiencing some strange issues and took a very long and thorough list with her to a doctor appointment. I heard one of her many doctors say to her, in highly medical doctor-speak, that she was just old (57) and fat, and needed to lose weight and she would get better. She died from brain cancer not even 6 months later. I have a deep bitter resentment to much of the medical and medical insurance fields. I don't know if it would have saved her life if someone would have listened to her but it would have at least given her back her dignity.

[@bluesunquake]

I'm so sorry!

[@Marcylala]

@@bluesunquake Thank you (hugs)

[@iseydelmar]

As a physiatrist I feel the need to apologise. Let aside the shame of the flawed research, no doctor should EVER file symptoms as psychosomatic straight away without an accurate investigation about other possible causes. No one AT ALL should feel entitled to say "it's just in your head", even when it's due to alterations happening in the brain, therefore actually in one's head. With the same logic myocardial infarction is "only happening in the heart", right? and diabetes "is just in the pancreas"...

[@francescoleman-williams911]

Maria Delise Yes! Well put “it’s all in your head” is not synonymous with “you’re making it up”/“you’re pretending”. Mental illness is real and people talking as though physical illness is more real than mental illness is mega unhelpful... Usually love your videos Jessica!

[@Oxalis_stricta]

I have a thing where my brain perceives miner things like touch and cold as pain. The doctors constantly explained that it was in my head, but that I wasn't making up the pain. Which was confusing at first.

[@Reicha]

@@francescoleman-williams911 No, agreed. That is absolutely equally unhelpful. I think it takes on that tone due to the fact that that is the attitude doctors often have as they deliver this sentencing of psychosomatic disease. It's not said with the gravitas of "you have mental unhealth and it is so bad that your body is actually having symptoms", which is a very real thing, it's said with the belittling tone of, "you are imagining this symptom even exists just to be difficult". Like how my mother described her experiences with health care, "It's 'just in my head', but it's also 'totally under my control' and there's 'something wrong with me'. But it's 'entirely my own doing'. Either something is wrong - or I'm just faking! Pick *one*!"

[@mentalhealthwithalana]

Yes, my doctor told me it was just stressed and to exercise and sleep less!! 🙄🙄🙄

[@sophroniel]

I spent my whole life being told pain and all the stuff related to EDS was psychosomatic/hypochondriac........ until I got diagnosed with the genetic test and my doctors/mother were like "oh. yeah. your pain IS real. lol soz" 🙄

[@nowitsclear]

Sophia Neilsson I want to kick doctors who go "Your life is disrupted because of recurrent/chronic issue? Yeah it's psychosomatic, due to stress and bonus if you are female. Just go home and live with it". Argh! Even pain that cannot be resolved should be managed!! 😡

[@etherspin]

Laure the 'hysteria' style stuff female patients have to put up with sucks ! As a guy I can say there are unique problems for us as well, ideas that it's not a disease men get, something we can push through, ideas that it's not masculine. I started getting CFS in 07, didn't have a clue what was going on till 2010 but then actively avoided the label and diagnosis (exhausting other types of specialists) till start of 2013 when I literally could not walk from the kitchen bench to my car to return to work after Christmas break and retired from my career. Must confess I still avoid using the terms with other Australian males cause of subculture, I emphasise my POTS or EDS that were diagnosed as a result of the CFS onset. Genetics clinic... Haven't experienced any doctor or emergency room taking me seriously for being a bloke , I had snarky inclusions in the referrals from my original Doctor and then snark back from the neurologist when he had assessed me, their letters tried to frame extended family as having mental illness cause I'd simply talked about a couple of neurotic extended family and tried to tie my nerve pain to anxiety. Even their final referral to a CFS specific clinic said 'suspect CFS or other psychological basis' - I love the doctors at the clinic and they were pissed about that letter! Like the fine lady who made this video (I don't know and cant see her name from this comment box!) I have EDS as my basis and at the moment am a bit baffled about what to do on Government forms for a new program that can help pay for therapies and equipment cause they ask for your primary and and secondary condition to be listed and EDS makes me clicky and uncoordinated but CFS is what completely traps me at home and isn't recognised as disability by this scheme. Thanks to above mentioned fine lady for this excellent video BTW !

[@theformlessmist]

I have hEDS which can’t be diagnosed genetically but apart from that, same. I also have bipolar disorder and some doctors have ignored my EDS diagnosis entirely because they think I’m just crazy. 🙃

[@glittery_cucumber]

I honestly feel like 99 % of the time "it's psychosomatic" is just what doctors say when they can't or don't want to help you.

[@Krazykat3141]

@@glittery_cucumber the other one is "it's hereditary". Yeah

[@CptLainey]

If you took a still of this video Jessica could definitely be on an album cover or in magazine 😲

[@kirstygunn4523]

@@miipmiipmiip if so where do we sign up

[@happypiano4810]

I paused the video randomly multiple times. It’s never something weird, or funny, even mid blink. She just is, somehow, continuously photogenic. What is the secret?

[@lss74]

A 'Florence and The Machine' album cover me thinks

[@rosieposy8]

You are so well spoken. I am a Gp and have many friends that have been diagnosed with ME. I didn't know about the issues with the PACE trial. Thank you for this. And the reminder that we sometimes attribute symptoms to cfs incorrectly. It will change my clinical practice.

[@myladyswardrobe]

Wish you were my GP.

[@turtlepenguinXkizuna]

This is such a wonderful comment and I'm so glad I read it. You seem like a good person and I'm glad you are a doctor.

[@user-nv7uq3zj5e]

Need more GPs like this... you are a rare gem ❤

[@adultgene8361]

*Standing ovation* I am a biology student and disabled person (fibromyalgia and hypermobility), I am so fed up with 'cures' that some doctors, charities, books, random middle-aged women and newspapers try and tell me it will fix me. Just went to see a neurologist who thinks all my problems are caused by fibro (they aren't) and all the doctors appear to be ignoring my hearing problems. Everyone is influenced by studies like these and I have found a lot of doctors apply this type of theory to fibro as well, 'just do yoga'. They often forget I know exactly what they are not telling me and where they have got that piece of false info from, and if they tell me about a treatment I will just go home and read the original paper. Thank you for talking about this. This comment is so ranty, but on a more positive you kept me occupied when I was having the worst neurological flare up I have had yet at Christmas (which resulted in a seizure which the doctors and also completely ignoring). You made me feel a lot less alone and your voice was the only one I could understand though the hearing loss and fog. so THANK YOU!

[@sophroniel]

Adult Gene oh man, can relate. I have EDS and do my research, like reading the up to date literature and papers. So when my drs are like "try yoga" I'm like... why tf are you asking someone who is hypermobile to ... make their.... hypermobility.... worse... 🤔🙃

[@AnnikaVictoria24]

🙌 yes to all of this. I am also a molecular biology student and a spoonie (takayasus arteritis, fibromyalgia, ibs and a handful of other things and mystery symptoms which are often explained by “its in your head”). It’s so hard and so easy to feel alone & like you’re going insane. You’re not alone!

[@AnnikaVictoria24]

Sereniea literally why I started the #babewithamobilityaid tag on Instagram/Twitter. It’s ridiculous, so many of my doctors express disbelief as to why I need a mobility aid (um, coz I don’t want to be house bound thank you?) even though they KNOW my medical conditions and know I faint and am so fatigued and exhausted and in pain all the time. So much internalised ableism in the medical system.

[@jessicaoutofthecloset]

Thank you for your comment, I really appreciate people sharing their own stories! Sending you lots of love xx

[@theformlessmist]

Hypermobile? Try a form of exercise that really encourages hyperextension! That should clear it right up. UGH! Doctors!!

[@AnnikaVictoria24]

Wow - this video is amazing Jessica. As a molecular biology student, can I just say you covered the problems with this paper far better and with a lot better critical thinking than so many science students/scientists do! From watching this, I realise that I’m one of the lucky ones whom for which a gradual increasing exercise program has actually worked, and I think it only worked because it was initiated at a point where my main illnesses (an autoimmune condition causing chronic fatigue and fibromyalgia among others) were stable and under control. But it makes me so mad when doctors/people in my life will see my case, and assume it can be used for *everyone* who is sick with any debilitating illness. These conditions vary so much and there is NO one-size-fits-all solution. My sibling, for example, has been diagnosed with conversion disorder. I hate seeing my parents or doctors who know us both go “see, Annika is better after exercising a bit, why can’t you do that”? We’re like: It’s not the same thing??!?! Gah. Thanks for making this video. I hope it opens some minds and gets people thinking, and helps people be less judgey!!

[@neromillie]

You gals are both my chronic illness gurus - thanks for putting your lives out there for us! x

[@jessicaoutofthecloset]

Hi Annika! I so agree with you that there is no one-size-fits-all solution... it's so frustrating! Thanks for sharing xx

[@philmm64]

This is so critical! not "one size fits all" - which is what the PACE trial was trying to prove could be done. It can't..... each case is different with CFS/ME.

[@maidende8280]

Honestly, so many drs & scientists are incapable of proper study analysis. And there are so many badly done studies. As a scientist myself, it just infuriates me. The way the media twists findings & reports on barely significant results, misleading most laypeople, only makes the misinformation worse.

[@Velo-vl3qj]

I think one key is that you mentioned you have an autoimmune condition that caused chronic fatigue, rather than Myalgic Encephalomyelitis. For people with ME, they can't exercise to wellness, but many people with other illnesses that cause chronic fatigue can improve with exercise.

[@dannilion]

I've been unable to walk due to ME (and POTS) for over 7 years. I had one doctor tell me to stop using my wheelchair. She didn't have any suggestions for how to get around without it. Maybe flying? I tried the exercise/pushing through method when I first got ill (and hadn't been diagnosed) and that's why I could no longer walk in the first place. I've been pretty lucky to mostly have supportive doctors (my delayed diagnosis was due to other conditions I had, not their negligence), though being told I was too ill to see my consultant hurt a bit (I'm now 99% bed bound and even stretcher travel makes me worse, so she had a point). Working with my body means I can now eat solid food nearly every day, I rarely become paralysed and very occasionally can get out of bed and even outside. Much better than before 😊

[@thistle_berry]

Good job, friend! It sounds like it took a lot of hard work to get there, so I hope you continue to feel as good as you can! I know this is a little late, but I still wanted to say that I though you were doing a good job.

[@cinnabonbon]

I hope you are doing well! This post has kind of inspired me to try and speak to my doctor, as I have realized lately that standing up and moving around causes my heart beat to rise upwards of 40 bpm, but I had been delaying it because my doctors have denied me care in the past by telling my mother I was simply being "dramatic" when I was unable to change positions or even breathe due to heart issues. Hoping my case can turn out as well as yours 💖

[@kirbird]

This sounds so much like the Wakefield (1998) article suggesting the false claim that autism is linked with the MMR vaccine. Poor research practice is SO infuriating! Oh, and therapy such as psychoanalysis (focus on the 'unconscious' and 'conscious') is drastically lacking quality scientific evidence, and yet is still used widely throughout the UK, US and parts of Europe. I'm so sorry the impact this has had on you, Jessica. Thank you for sharing your experience and spreading awareness 💕

[@Totoruth]

Hello Jessica, My boyfriend has ME and he has had similar experiences. We were actually away on holiday when the Independent broke the story. Needless to say that holiday was rather ruined by that. He is similar to you now; every weekend, we talk about what we would like to do if there were no limits and then we decide on what we can do based on his health that day. There are times when he doubts himself and says, “‘maybe I’m just not trying hard enough.” It’s awful and just goes to show how insidious studies like PACE are that cause people to think that. He is quite fortunate that his work is done from home, which means he can work. It is not uncommon for him to get to Wednesday and be in bed for the rest of week because of the energy he has expended.

[@PhoebeFayRuthLouise]

I’m so sorry for all that you are going through due to that big misleading PACE trail! Argh! Also, I couldn’t help but notice that your sweater and pillow and rug really complement your coloring! And thank you for making a video on a lying-on-the-floor- day! Well done

[@TheSwayzeTrain]

I thought the Russian bots were meant to be trying to interfere with the political process in other countries, not going full on frisky dingo in social media. Steady on Comrade 'Michelle'. At least offer to buy the lady dinner first.

[@Faylengames]

Your videos bring me so much comfort. I have chronic fatigue and pain from fibromyalgia and I was just crying after braiding my hair from the pain and decided to lay down on the floor. Your video turned up and now I'm on the floor with my pillow looking up at the TV watching you on your pillow and I know I'm not alone. I just started the video but I really wanted to tell you this. I know what we're both going through is very different, but I relate to you all the time and your positivity gives me a lot of strength. So thank you so much for your videos.

[@sturmykins]

You are not alone. Watching this video in bed. I'm super tired, but pain isn't letting me fall asleep yet. SE we can just listen to Jessica's soothing words and whip art intellect together. 💗

[@madelinemiller2339]

I am currently studying biochemistry (with a focus in medical research) and I had unfortunately heard this story before. We literally looked at this as a classic example of bias in medical research. Those researchers committed the greatest crime in the medical community possible-- they intentionally framed their data the have a positive result. Thank you Jessica for bringing this up!! Public awareness/accountability is something the medical community really needs

[@beckybaker703]

It took me 6 years to get diagnosed with ME. I saw every doctor I could think of, and they all eventually shrugged their shoulders and said "We don't know what's wrong, but let us know if it continues!" I even went to the Mayo Clinic in Jacksonville FL....the neurologist I saw there said "There's nothing wrong with her, other than her overwhelming anxiety." Nah, bro. Then one day, a coworker sent me a TedX Talk. She thought I'd be interested because the speaker also had a "mystery illness" that no one could figure out (I'm sure she was trying to cheer me up). The speaker was Jennifer Brea, and it was the first time I'd ever heard of Myalgic Encephalomyelitis. I Googled it, as I did all unfamiliar medical terms, on the off-chance that it might be what I had.....and I ticked all the boxes. I was absolutely flabbergasted! I quickly emailed my primary care doctor for information. She'd never heard of it, but there was an ME specialist in my hometown. Did I want to see him? YES!! And the rest is history :)

[@missmaryypotter]

Laying on the ground to film a video is genius!

[@heatherj4351]

Im also bedbound at the moment. I have been diagnosed with so many different Auto Immune diseases over the past 30 years and none of them agree with the the others... Its so frustrating. Watching your videos help my spirit so much.

[@azarinevil]

I had this issue when I was 17 and had my immune disorder kick in. No doctor could figure it out so I did my own homework. I suggest go with making some Venn diagrams to help whittle down the options, you ultimately know what is going on better than any doctor. There are quite a few and most doctors, including specialists, have no idea what all of them are as some are super rare. I had to figure it out myself and my GP double checked my work, coming to agree with my assessment. Still have it and it still effects my life, but at least knowing what triggers it helps improve your day to day and gives you some peace of mind.

[@amybyrne5208]

It annoying that they are allowed to hide this from the public. The patients should be priority. This is kind of like the smear test scandle in Ireland where the test didn't pick up an irregularity. Around five women are dead and the results effect over 140 and half of them haven't been notified. But the government didn't say anything about it. Also medical treatment should be free how can anyone pay for medical care if their bed ridden or can move

[@kittling5427]

In this case though its not been hidden from the public - its been debated at the HoC but the general public don't seem to be that bothered about it

[@amybyrne5208]

I think that's part of the problem as well no one now seems to bothered but some people's lives have been ruined

[@maryeckel9682]

I didn't know until now how flawed the PACE study was, and I've been harmed by inappropriate physical therapy based on its ideas (in the US). Ive always known just by my body's poor reactions and my intimacy with how I feel that something was wrong, but this was revelatory and affirming and I'm getting emotional.

[@katrinashaw2195]

Shocking how scientific research can be used for such evil intentions. Makes my blood boil.

[@jillyfish72]

It wasn’t really scientific research...

[@AnEnglishRosette]

I am so in awe that you are so articulate and informative about such an important issue when you’re feeling so rubbish! You do humankind proud, thank you so much for your incredible videos ♥️

[@jennieguinevere]

I have ME and straight up refused GET and CBT because I knew they wouldn’t work for me. Thankfully my doctor was incredibly supportive and didn’t pressure me, but lord knows what would’ve happened if I had a different doctor... Loved this video tho and found it super helpful for putting forward an argument against PACE when someone brings it up, thanks for all the info and the stats! ✨

[@carafraser783]

I'm doing a talk on this queen in class

[@catbeara]

Cara Fraser That's awesome! If you don't mind me asking, what's the talk about/for? (Just out of curiosity, if you don't wanna answer that's fine!)

[@carafraser783]

catbeara its for English and we got to do a talk on ‘why we like’ so I’m doing a talk on why I like her (Sorry if that didn’t make sense I’m bad at explaining things)

[@jessicaoutofthecloset]

Awn you are so sweet, thanks Cara! x

[@catbeara]

Cara Fraser it made sense. That's cool. 😊 Hope it goes well!

[@carafraser783]

catbeara Thanks

[@wheelie26]

I think some Dr feel the same about fibromyalgia, I’ve had a Consultant who I used to work with say to me that FIbro is a illness in the heads of middle aged women who are hysterical and have nothing better to do than think up symptoms and play them out. I was so disgusted and shocked by his attitude and felt such empathy for the men and women, from teenagers to elderly patients who had these very real symptoms which were very disabling, distressing and effected their whole lives to varying degrees. Like all illnesses fibro symptoms vary from patient to patient and also vary from day to day, week to week but one thing was obvious and that was the fact that the symptoms were very real.

[@mrphoenie9788]

wheelie26 i got this with my conversion disorder diagnosis. Doctors were telling me its all in my head or im making it up. My therapist explained that chronic illnesses like fibro or CD, have where your nerves and brain are constantly miscommunicating and that is why we are in constant pain

[@Abigail13255]

Whenever I run into people that say things like that I like to lean in and ask them why I got sick at 13 then. Always shuts people like that up

[@wheelie26]

Abby Fabulous good for you, never let a Dr or health care professional or indeed anybody else make you feel bad about your illness/ disability. It’s hard enough to live with these issues without people making you feel worse. They are supposed to be there to support you.

[@wheelie26]

iKeyLimePie sounds like a good description to me.

[@wheelie26]

What I forgot to mention is that several years later I developed a very severe infection which led to MRSA sepsis and has left me with a physical disability (I’m a full time wheelchair user) and have chronic illness. Part of this was a diagnosis of fibromyalgia. It was several months before I told anybody about this due to what that consultant had said. Now I just think he is an a@#e hole.

[@jessyl9525]

My heart aches for everyone who were being invalidated in their pain and given false help due to this faulty study. As someone who does not have ME but has been told their chronic illnesses (Ulcerative colitis, Celiacs, arthritis + anxiety and depression to go with them) were in my head and could all be solved by diet and exercise, luckily not by doctors but by well-meaning but ignorant people, I can only sympathize with the frustration. Also, idk what is wrong with ER doctors but why do they always blame pre-existing conditions with no other thought? I once was told severe abdominal pain was my Celiacs even though I hadn’t had any gluten since I was basically diagnosed. And, surprise, it wasn’t and wasn’t even tangentially related! Sometimes health care is it’s own worse enemy. Thanks for shedding info on such an important topic! Such a great video as always

[@rsmallfield]

One of the PACE authors described the opposition to the study as being conducted by a small, focussed group of sociopathic, borderline psychopathic, young men, who are stopping the voices of the majority of ME/CFS patients being heard. I must say that your disguise is very convincing. I’d never have picked you as being a young man.

[@rsmallfield]

@@johndododoe1411 It’s corruption from top to bottom, perhaps a reflection of the way the whole medical system works - perhaps the way the whole world works. People are rewarded and awarded for destroying lives, because they are part of the old-boys’ club. Their behaviour is criminal, yet the get rewarded, instead of punished. They are probably sociopaths and are absolutely beneath contempt.

[@jennyhorner]

Wow this is an amazing explanation of the long list of PACE problems! And it’s got over 15,000 views already so great for #MEAwarenessweek Very honoured and smiley that you mentioned me and linked to my blog ☺️😀

[@jessicaoutofthecloset]

Thanks Jenny! 😊🌸

[@chaeburger]

Thank you for this. I am currently fighting with doctors about a hypersensitivity to medications (primarily their side effects) which is so bad that I can't be treated for my inflammatory bowel disease, depression, anxiety or chronic joint pain. No one actually believes that I react to everything, even when my reactions are listed in my medical record. I was sent to an allergist who, after learning I cannot tolerate OTC allergy meds, suggested I try essential oils and yoga and sent me home without informing my GP. Not only is that recommendation anti-science, I can't even do yoga because of my chronic pain! If I had a dollar for every time I had a medical professional tell me that my mental and medical issues could be solved with exercise and positive thinking, I would have enough money to actually afford healthcare in America.

[@cejaker]

I was diagnosed with JHS and EDS when I was four years old and basically, my entire life has been people not believing my pain because they couldn't see the damage. I've had so many physical education teachers force me to participate in sports which have lead to weeks of pain. One of my teachers forced me to run in the school fun run, which resulted in me fainting from the pain and getting shin splints. I've been to the hospital and after telling nurses that my level of pain was a 9, them giving my a children's pain scale with faces on it because "I didn't understand the adult scale and couldn't be in that much pain." I love your channel so much, hope you feel better soon! xx

[@lakateyann]

Thank you Jessica. I have been diagnosed with ME/CFS, fibromyaliga, endometriosis, IBS, TMJD, migraines, and chronic sinusitis. I am only able to work parttime. And I find it almost impossible to have any social life or keep up with anything else outside of my job. I often feel alone and like a complete failure. Your videos help me feel understood and give me hope. Thank you so much!!!!

[@katereagon4299]

Man if I had a dollar for every time a doctor told me my illness was psychosomatic/not real I would have so much money. Thank you for talking about this Jessica!

[@Jahleesu1]

That's very interesting, thank you for this video! I'm diagnosed with cfs, joint hypermobility and diverse other things and i just was in the clinic for two weeks for pain therapy because of my chronic pain. Unfortunately most of the program was exercise therapy... after 10 minutes on the xtrainer i was so exhausted i spent the rest of the day lying down and the next day was worse and the next even worse... In the end i started not going to the exercise because it made me feel so much more exhausted and sick, and it didn't do anything for my pain. In the end the two weeks were pretty much wasted time (if not for the diagnoses i finally got on paper)... To the psychosomatic part: i have psychosomatic problems in other body parts, but i always hate so much when doctors think EVERYTHING is psychosomatic! I know the difference between for example when my depression makes me not want to do things and not being able to do things because of exhaustion because of cfs. They are two totally different feelings, even if they look alike from the outside... Having mental illness and then getting physically ill is horrible, because nobody takes you seriously and nobody believes you that you know what your depression etc. feels like (because you've had it since you were 8 years old), and THIS isn't it!

[@Velo-vl3qj]

I'm sorry that you were encouraged to exercise when it wasn't safe for you! I hope you've fully recovered from that program.

[@aurorarose6678]

❤️❤️❤️ this is so lovely !!! i have cfs & treatment-resistant bipolar, & i’ve been through much of this same experience with regards to ECT (electro-compulsive therapy). brace yourself for a long story, i didn’t mean for this to get this long :p i went into ECT because i has been through dozens of medications and years of therapy & meds, & at the time i was in a depressive episode so bad i couldn’t even get out of bed. it was a last-ditch effort; i have a severe electrocution phobia, so it was the last thing i wanted to do. it was literally just my wife & i desperately hoping something would stick. i was told a lot of things wrt ECT: it had an “extremely high” success rate, there weren’t any significantly high risks, and my memory would get worse while i was doing ECT, but would all come back within seven months of stopping. i actually ended up stopping ECT based on my own decision probably four months-ish later, because i’d done some research of my own and the fine print on all of those claims was extremely frustrating. not only do we have only a handful of studies with regards to the effects of ECT long-term (there are like, incredibly few that follow people more than 6 months after stopping), but the evidence we do have says that at LEAST 50% of people relapse within the first 12 months. the thing is, a 50% success rate IS really good in the psych field !!! but when you hear “a great success rate,” you don’t think 50%. another thing i was sort of lied to about ECT is the memory stuff. most technicians will tell you that your memory will come completely/mostly back, but the evidence doesn’t really back that up. in fact, a majority of people who have gone through ECT believe that it has significantly impacted their long-term memory in some way. i’m just over a year past the self-appointed end of my ECT, and i can’t remember a lot of really important things in my life; i have really bad retrograde amnesia and medium anterograde amnesia, and my wife has to remind me of a lot of things (both from before the ECT and in our day-to-day life). at the same time, i genuinely think it acted as a placebo effect to kick my brain into high gear & help it work with me. the depression isn’t so bad anymore, and i have a work-from-home job that actually pays the bills. but now, i’m really, really big into informed consent, not just for me but for everyone else. i don’t just trust doctors anymore unfortunately, because i know there’s a decent chance that i’m not getting the full story. seeing other disabled people out there doing the gods’ work and just Letting People Know the actual truth about things is so so great for me :) i know this got all hells of long and @ jessica if you read this i applaud you :p i appreciate everything you do and as a hard of hearing lesbian with cfs, it’s absolutely insane to find someone with any kind of platform who talks about these kinds of things ❤️❤️❤️❤️❤️ keep on keeping on.

[@tashsaysmeow]

I have fibromyalgia and went to hospital because I was in a huge amount of pain. It wasn't my normal amount of pain. I was getting shooting pains up and down both arms. After waiting for over 5 hours to see someone, i was given some ibuprofen and told to go home because it was probably just my fibro. Turns out I had pinched a nerve at the top of my spine when I lost control of my wheel chair going down a hill earlier that day and crashed into a wall. (I told them about the incident but they didn't care) because I didn't get treatment, I now have permanent nerve damage in my spine.

[@onebadmouse1603]

Thank you so much for this. I went through 2 lots of CBT & pushed myself to keep working until eventually my moderate MEcfs became severe. PACE just adds insult to injury.

[@morganrink9710]

YES!!! I'm so glad you covered this topic! I have been told by so many medical professionals to exercise even professionals who specialize in something that doesn't encompass ME. The most frustrating was when I was seeing a allergist, as soon as I had told him that I have ME, he went on to tell me that he had published all his work on fatigue in prestigious medical journals for 20 MINUTES! He literally told me to sleep less and exercise. HOW DOES THAT MAKE ANY SENSE?!?!?!?! I digress. I think what medical professionals don't understand is that general fatigue is NOT the same thing as CFS/ME. Just because it has the word in it, it doesn't mean that it is the same. Yah know? And a lot of the times, the medical professionals I've seen, will make the excuse that CFS is a syndrome not a disease so it is somehow lesser of a illness. It's like comparing a broken bone to MS. Both serious but completely different. Like you were saying, I was diagnosed with ME but I knew that I had other problems for years and multiple medical professional just said it was because of my ME. Turns out I have endometriosis and Hashi Moto's Thyroiditus! But I had to fight with so many stupid and ignorant people just to get those diagnosis and then I had to fight even more to get treatment. But because ME is an invisible illness, we will always have people telling us that its all in our heads or be discriminated against for whatever stupid reason. At the end of the day, sometimes its not worth the fight though if I am able to fight, I will damn near kill anyone who gets in my way.

[@OceanicMarauder]

I absolutely love this video. You did an amazing job going over the study and the downfalls regarding. This is why I don't talk about my chronic fatigue when I discuss my CRPS with professionals

[@abipritchard5141]

This is the same for other chronic conditions! I supposedly have ‘chronic widespread pain syndrome’ , They blame EVERYTHING on that one condition. I went to a children’s rehab for chronic pain for 3 weeks and came away with 2 messages 1) if you do this physio (aka exercise) then you will improve and 2) “if you think positively and have a positive lifestyle then you will completely recover” we basically exercise and CBT and told us to stop thinking negatively and we will be fine 🤦‍♀️

[@Gigglypeach]

I was diagnosed with ME/CFS (and then PoTS) at university in Bath, so quite close to Bristol, and the after effects of the PACE trial really affected my treatment there. Weirdly, not from specialists, but from my many GP's. I was so lucky that my truly awful GP gave up on trying to diagnose me after year and sent me to Bath's specialist adult fatigue unit, even though his exact words were 'they'll send you right back to me, it's so obvious it's all in your head and i'm done with you' (yes doctor of the year right there). The unit immediately diagnosed me with the right things and got me on track with various medicines for the side effects, some CBT for the mental problems and set me up with that lovely colouring chart and really helped me with just pacing out my life, learning my limits. That's all they can do, but I was treated with real care and dignity and was never made to feel like any of it was in my head. I was discharged from their service after a year or so, but I felt confident that I could manage the ME/CFS going forward. Then I went back to my GP for continual treatment and all the problems started again, even though I had an actual diagnosis! Everything was blamed on the ME, even completely unrelated things, but absolutely every single one of them told me to do more exercise and cited the PACE trial as back up. Luckily my fabulous occupational therapist from the unit had told me to steer clear as there was 'something fishy' about it (she was right!) Even now living in a different city, I'm constantly being told that GET is the right thing to do and i'm so fed up. It obviously doesn't work, I have evidence from that one time I did one three minute dance at a barn dance and ended up in bed for two weeks. Pfft. i have actually stopped mentioning my ME/CFS at doctor's appointments now and find that i'm being treated much better. Grrr. Apologies for the essay ♥️ (wish I had a nice rug to lie on, I've got ratty carpet and carpet moths) x

[@MichelleJNorton]

In the US they just have you try random depression meds and see if anything changes...that was horrible.

[@moppleinga7025]

Ive been treated with complete disdain at hospitals soon as they see my record .. Nothing short of eye rolling.refusing to accommodate my wheelchair. and they 90% dismiss me for everything else that's been wrong with me regardless of red flag my symptoms are. I too had that happen with stones. Ridiculous. The nurse ran off and denied all knowledge. I worry that one day ill have something life threatening and ill be completely dismissed and die as a result. I had viral meningitis that a doc left me with for a long time.. And lung infections.. u need to go out and see things"???? Yeah. The hospital were horrified and that doc immediately retired.. Coincidence?I've come to fear hospitals and feel my neighbour would be better at saving my life should it come to it

[@Jeikitten]

I'm so sorry you had to go through all of that. I had medical professionals brush off my concerns about my mental health for years and years and years. It was actually after watching one of your videos about standing up for yourself and being a self-advocate that I finally switched doctors and tried to find one who truly listened to my concerns and validated them. I didn't need anything done about it I just wanted someone to acknowledge the concerns that I had and see they weren't 'normal'. And thank goodness I did! I'm with a wonderful wonderful lady now and she not only assessed me, but put me on medication I didn't realize I could have for my condition-- and my interactions with the world is so shockingly better! It's so brutal how those doctors treated the study, and that there was someone who was advocating for reducing funds knowingly using unscrupulous methods to support his views at the cost of so many individuals well being. I'm so sorry you have to go through all of that! I hope these issues will be removed in the future, it seems archaic they're still utilized after being confirmed essentially fraudulent. The best to you today!

[@DesertMermaid]

Im sorry you went through this. The same kind of thing happens here in the US. I live with chronic back pain and I'm treated the same way every time I go to the ER. A few years ago, I got really sick with pancreatitis. It took 4 ER trips for the doctors to take it seriously. My pancreatic levels were so high on that fourth trip that I probably would've died if I had been turned away. All because it was assumed I was faking it or being lazy. No one chooses to be a spoonie. The ignorance, especially from educated professionals like Medical Doctors is so frustrating! Thanks for sharing! It helps to relate to ithers going through the same. As always sending you lots of happy mermaid vibes and all my love 😋💗🌵🐚♿️☀️ P.S I Love your filming setup! 💗💗💗

[@blahdel]

I live in the US so the PACE trial isn't really utilized here (that I'm aware of). But, recently, my symptoms had started getting MUCH worse - I used to be able to walk up flights of stairs and be slightly winded, now I walked up one flight of stairs and needed to rest or I'd throw up from pushing myself too hard. So, since moving to a new area, I found a new doctor. My meeting with the physician's assistant was wonderful. He listened to me, heard what I was saying, even said that the doctor should be able to recommend me to a specialist for treating ME since we're in NYC! I was thrilled, finally I felt like someone was going to help me. Then, the doctor came in. She didn't even look at me. She took my info from the physicians assistant, glanced my way and said "send her to psych." She attributed my worsening ME symptoms to my previous (now treated, and completely unrelated) history with depression. WTF? I was so mad. I went to see the psych and he basically said "yeah, you definitely don't need to see me really. It sounds like you need a specialist." Needless to say, I did NOT go back to that doctor even though I only went to her just for a referral to see a specialist. Instead of getting the care I needed, I got shamed for my illness, told it was entirely psychosomatic, and was dismissed. It's ridiculous that we have to live this way because people are so misguided.

[@FlyingWonderGirl]

Dakota DelValle report them to medical officials! Treating anyone like that is not okay!

[@blahdel]

I'm not exactly sure who I'd report it to and I'm not exactly sure it'd do anything tbh. It's at a doctors office in a low income area so I doubt any actions would be taken.

[@kittling5427]

Unum, a US health insurance company, were one of the funders of the PACE trial & they have been pushing the results to reduce the amount they have tp pay out to people with ME/CFS in the States.

[@blahdel]

I had no idea. Thanks for letting me know.

[@lss74]

In 1994 my GP's words for my M.E/CFS diagnosis went like this "You meet the current criteria for M.E/CFS" me....."What's that???"... "Maybe go to a library and also join a gym. Here is a prescription for anti-depressants". Me "but I am not depressed"? Cut to me sat in my parents car outside the GP surgery balling 😥 and my parents saying is this disease very serious, whats going on? I simply said.... "I don't know". Yes I too completed those PACE forms. Sending l❤ve and support to all reading this. And if you get called LAZY ignore it, don't waste the little energy you have on these idiots!

[@rachaelamber22]

I've had the same thing happen with doctors.. I've had doctors say "it's all in your head" and it's soal distroying. I've done some of the garden today and I know tomorrow I will be bed ridden

[@ferretisland2945]

Thank you for this. I have been dx with ME/CFS recently. I am getting a wheelchair to help me live in harmony. I struggle with it though. So many people still believe it's in the head. I get frustrated and just say dysautonomia with a whole bunch of side issues. Love you 😘

[@thelunalakes]

I have also visited the same clinic for cfs/me. I went to so many group therapies and filled in those stupid forms. It was all useless. I was sent to a junior doctor for sleep therapy but it was just filling out the same forms again, not once have I been offered medication or anything to treat the symptoms. I just gave up going because I was using so much energy to get there and back. Im just learning to listen to my body and give it what it needs. Although I do agree some mindfullness and positive thinking is needed to deal with the ups and downs of cfs/me it definitely doesnt help with ongoing PHYSICAL symptoms. Thankyou for making this Jessica, i will be sharing this around as much as possible xxx

[@rebeccaude4412]

I think there are so many of us discriminated against when it comes to the ER or A&E as you call it regardless of our condition! I do not have ME/CFS, but I do have Fibromyalgia, Raynaud’s Syndrome, Narcolepsy & Lupus. These issues I have been able to keep under control rather well by knowing my limits, stretching & medication. The big problem began 21months ago now when I developed Autonomic Neuropathy also known as Dysautonomia. So for 21 months now, I have run a fever every single day, and they can be upwards of 102 F! My body cannot control my temperature, my blood pressure or my GI Motility...don’t even get me started on the pain! So more medicines after being rushed to hospital for blood pressure of 212/124 & 220/116. At least they took me very seriously as there isn’t a way to fake a B/P like that along with a temperature. My amazing Rheumaltologist here ran every test he knew to run, then referred me to a very prestigious specialty hospital about 5 hours away from my home. The doctor I see there is immensely talented and intelligent, & he thinks this is being caused by an Auto-Inflammatory disorder that is very rare called Yao’s Syndrome! To find out, it starts w/a NoD2 genetic test, then depending on those results, a 7 panel Fever genetic test. This is where I have hit a wall..since we have private insurance, they asked for all of my records to decide if it was medically necessary to have the FIRST test done! Out of pocket, it is $1400.00, & if the test was positive & I could come off of 3 of the other meds...it would save them over $1400.00 A MONTH!! Not just one time like this lab. So I have doctors who care greatly, but they cannot do the tests they need to figure out what is causing all this! I know so many of you are in the same mess I am, & I pray that somehow God will open doors for us that at this point remain closed. Hang in there Spoonie Family, keep strong & keep fighting 💪🏻💪🏻💪🏻! Much Love Jessica, Claudia, Clara, Evelina & of course the fur babies!! 🤗💜😘

[@notwanheda9056]

Rebecca Ude I don’t know if this will work for you, but at least try it. Try contacting the insurance company directly and ask to speak with a HIPAA Compliance/Safety Officer. There should be somebody like that. Then ask for the names AND CREDENTIALS of everyone who has had access to your chart to make the decision to deny you getting those tests done. I’m almost positive it wouldn’t have been an accredited physician with a specialty in neurological disorders. Particularly such a rare one. They’ll hopefully change their mind about making you pay out of pocket for those tests......... I believe there is a board that you can report refusals to as well? Office of Civil Rights or something like that. I’m assuming you are from the states btw, I have no idea whether this will work anywhere else. Good luck Internet stranger! Get to feeling better and have a good day ❤️

[@me4901]

wow, $1,400 can be a lot but in the scheme of medical things, it's not that much. I wish we didn't have to resort to this option, but do you have family or friends that could set up a gofundme fundraiser, $10 x 140 people would cover the whole thing. I much rather wish we have universal health care, but since when don't maybe that will help.

[@me4901]

first get an appeal from your insurance company though.

[@rebeccaude4412]

Not Wanheda-I actually used to work for my Rheumaltologist & did precertifications & appeals for all of the biologic meds like Enbrel, Humira, etc. so I know about that process all to well! We aren’t to the appeals point yet, they just keep asking for more records. Our policy renews June 30th, so I think they are dragging their feet so I’ll have to meet my deductible all over again! Yes I’m in the States, lol! Thanks for the advice though, it’s much appreciated! 💜

[@rebeccaude4412]

Chrisfs-We can cover it out if pocket, it’s just the principle that we pay for insurance for a reason. Like I told Wanheda above, I seriously think they are dragging their feet until our policy renewal so I will have to pay it all anyway. The thing is, if thats the case.. they are the stupid ones b/c I’ll only be $600.00 from meeting my individual deductible for the year then! Unless they raise it of course, but my husbands Co. is global & I know my medical costs have been much lower than some of his local employees here! At least it isn’t a tiny co. where my med bills could affect everyone else’s rates! Thanks for the advice! 💜

[@carleighhahn3821]

Goodness. This is an absolute injustice. I will be sure to talk more about this, so more people know about it! Jessica, you are an incredible, luminous being. Your positivity always brightens my day! Much love and light!

[@gracea75]

Hi Jessica. I have ME/CFS and went through the whole 'CBT and exercise' debacle a couple of years ago. I had to spend half an hour in the hospital gym each week where I was told to push myself to do more, walk faster on the treadmill, cycle for an extra 2 minutes on the exercise bike (when I was clearly exhausted). I would go there on Mondays and often wouldn't get out of bed again until Thursday. The CBT was carried out by someone with no experience of ME. No help whatsoever. Anyway, thanks for the brilliant video and hope you're as well as possible.

[@kateaverett8285]

Thank you for sharing this! I'm currently in the diagnosis stage for a chronic pain and fatigue disorder and have experienced this with every doctor I've seen. I've written both my undergrad and graduate thesis (theses?) on hysteria and general dismissal of women's health issues from the 18th century onward and it blows my mind to now be living it. I often wonder if chronic illnesses like ME are seen as psychosomatic simply because they predominantly effect women. There has never been adequate research into female physiology and I feel that anxiety or stress can be seen as the new hysteria (physical manifestations of repressed psychological trauma). While anxiety is a very real issue for many people and needs to be addressed in its own right, it also provides a catch all for chronic illnesses that might otherwise be expensive to research - especially when that research benefits female bodied individuals.

[@ld335]

hearing you speak about this issue just makes me feel so sad for my wee mum. she has fibromyalgia but for the longest time they didn't know what was wrong and she's had all sorts of diagnosis, ME was one. i remember her coming out of a doctors appointment and crying in the car park with me just wishing the doctor would take her seriously and stop treating her like she was a liar. i'll need to show her this video because i haven't heard the subject discussed so thoroughly yet accessibly before, thank you x

[@thecottageunderthebridge9369]

I have ME and the PACE trial has been so detrimental to Patients, Doctors and Research. Thank you for making this video - I'm not up to explaining the ins an outs of this yet and you did it so well! I went to an ME service and had a lovely occupational therapist who couldn't do anything for me but at least listened to what I was going through. I used to bring her information, such as using a heart monitor to help with pacing, but 10 sessions and that was it. I was worse than when I started but that is all that was on offer for this chronic condition. I'm lucky to have a wonderful GP who doesn't think exercise will make me well and will make referrals for any new or worsening symptoms so I actually have had a lot of other diseases ruled out but I'm in the minority. I'm very encouraged that NICE are reviewing their guidelines with stakeholder participation (charity and patient input) so hopefully these damaging guidelines will be completely dropped.

[@kermitred1504]

I didn't know how much I needed this validation until now. Thank you so much for making this video. I've been told by doctors for years "you just haven't been working hard/long enough" when I've tried to say GET is making things worse for me. It got to a point where even I started to doubt myself. Thank you thank you thank you!!

[@quizzicalpirate7828]

Sorry you had to go through that V Cul. Have you considered joining a community of others for support and advice?

[@jessicaoutofthecloset]

Sending love ❤️ thank you for sharing!

[@moniquemartin8779]

Your videos are so lovely and comforting. I never feel like anyone of my friends or family members truely understands the pain or discomfort I feel daily, but then a video pops of you lying on the floor while I’m also lying on the floor because I have absolutely no energy! I have been a subscriber since you had 24k and I’m never leaving!

[@LymeDiseaseRadio]

Dear Jessica, LOVE your videos......they keep me going on days when I think I no longer can, so thank you. I have Stage III Chronic Neuro-lyme disease. Sadly, something my government (U.S.A.) denies and your government follows our "rules" such as they are for treatment. We, the Lyme community are making headway, albeit at a snails pace, in research and information. My pain level on a daily basis is compared to that of someone waking up from open-heart surgery! Yet we are denied almost all pain meds due to the fact that "it's all in our heads." I was forced to move due to a d.v. issue and therefore had to find a few new doctors...ugh! This last one thought "physical therapy," as in lifting 15 to 30 pound weights and stretching would help my nerve damaged body. It has literally laid me flat on my back for 2 months now with only a few weeks left of therapy. And NO, it did not help, just made the little spirochetes eating my body really, really, ticked-off. I have also been diagnosed with Epstein-barr, but according to the yahoos up here in the back woods of Maine, I should be fine by now! Sadly, I have had the same experience with doctors writing things into notes and before I even get into the doctors office, they already have preconceived notions about my "fake"conditions. With more than 365,000 in the United States getting infected, a suicide rate that is more than 58% (the highest known for any disease), passing it along to your unborn child and even your sexual partners, Denial Be Thy Name. You are correct....it's all about the money......sigh.

[@onceuponamelody]

It deeply irritates me that doctors and societies will read a study and COMPLETELY ignore the flaws in that study...how tf does that help anyone?! I’ve found that doctor’s are generally just lazy (with the exception of a great few) and that they have to be TOLD what to do. I’ve been fighting for an RA and/or OA diagnosis for years and have been told that I need to just lose weight based on my BMI (another flawed science). 😫 Thank you so much for this video as it gave me energy (ha) to keep fighting. 💜

[@foliomusings1754]

It is soul-crushing to be told by a doctor that your symptoms are 'in your head'. I heard it so much after I got diagnosed with ME/CFS whenever I got new symptoms that didn't fit. It took me a few years to get the nerve up to see a doctor again to talk about my ongoing symptoms that haven't been diagnosed. I am always afraid that I will be told that it's in my head, or I'm faking it, or that I'm not trying hard enough to fix the things that actively impact on my quality of life. Thank you for making this video. I think it helps to know about the misinformation out there so I can talk about it with friends/family/doctors.

[@alyseandrews1066]

Yikes. Terrifying implications for patients when medical health professionals are misled by biased/bad science/intentionally skewed studies! It's happened in mental health, in multiple prescription drug studies, in birthing procedures etc. Scary friggen stuff! There is such a thing as experiencing pain symptoms due to a ptsd type psychiatric disorder, but those disorders are far more rare than these doctors seem to think as they classify anything they can't understand as being exaggerated or made up by a troubled mind.

[@rhianwenj7597]

New to your channel. I learn more about my health concerns from you. I have fibromyalgia and a traumatic head injury. The tales I could tell you... When I told my GP I was fatigued and dud not feel refreshed after sleeping 11 hours, his response was "I wish I could sleep for 11 hours". It took over 10 doctors to diagnose vertigo - fancy dizziness after a head injury. A dermatologist wanted me to take tablets that didn't work well but had treriific side effects. But she was not prepared to discuss the side effects, just carry on taking the tablets that don't work and makes your skin so dry it bleeds. Yes qualified dermatologist encouraging broken skin barrier. You can't write the stupidity of doctors who have studied for all those years. Jessica you are an inspiration.

[@mayabrook1153]

I got snapped at by a nurse for not having referred myself to CBT when the idea was only introduced to me a few months before (yes, long enough to do something maybe if filling out a form won't completely use up all your thinking ability for the day and thus is very daunting) when I'd been diagnosed with cfs for years. Although I will say when I went to CBT they were very clear it wasn't for curing my condition and in fact definitely wouldn't cure me, it was more for learning how to manage it. It did help me a bit in managing but also didn't...really help that much in the long term. Since I've stopped going especially I can't say anything really comes up that's useful from it anymore. I think just seeing healthcare professionals regularly and being given tailored suggestions to your actual life and held accountable might be the thing that helps rather than any of the therapy tips and tricks. Learning the background behind the pace trial which dominates all advice I've ever been given and that if I only pace right then I'll be fully functioning and able bodied! makes me so angry. It's funny when as the patient you can tell what you're being told isn't true but it's hard to believe yourself and then you learn that the people in charge lied for their own gain anyway? The DWP is evil.

[@Hymna28]

I really love when you talk about disabilities on your videos! I don't have to deal with something that big, but I've been dealing with severe depression and anxiety my whole life, and I've always heard that "it's all in my head". Well, of course it is, it's a mental illness!! It's not my fault, I'm doing the best I can with what I have. I've had some psychosomatic symptoms and it is always terrible, and even when the rest of my body is doing okay, my brain is still ill. I'm really grateful that someone as awesome as you exists and is sharing with us your very positive views about living with a disability 💜

[@Hymna28]

Also, I'm not saying that chronic fatigue is the same as depression, as in my case, therapy actually works. But I'm also medicated, and a lot of people judge me for this, saying that I just have to "be happy", as in my brain is not really sick.

[@avaangel4ever]

Karen Ribeiro Oliveira I relate to this completely and it is hurtful when people don't believe the severity of mental illness. Thank you for sharing!

[@nekograce7914]

I have severe fibromyalgia and I hear that diagnosis all the time. “Make sure you exercise” “Yoga is really effective” All from doctors and ppl who are reading recommendations from studies. The exhaustion and pain I have from just showering puts me in bed for a day. Not to mention how I feel after an actual doctors appt. and the social security (our NFS) says “we grant you disability with the understanding you will work to get better” 🤨 Sometimes my head can’t handle all the stress and I get frustrated. Your channel has helped me.

[@rhi1989]

Oh this reminds me so much of my experiences with the mental health system. Im autistic and have PTSD and bipolar disorder (probably, its possible that was all autistic burnout and trauma stuff) but naturally, because i'm a woman, I was diagnosed with pretty much every other disorder before I was with ASD because of medical bias, bad science and sexism. Every woman I have ever met who has made it into a psych ward has at one point been diagnosed (usually incorrectly) with Borderline Personality Disorder. The thing is, doctors treat it very much like they do ME/CFS; Any problem you have is a result of that diagnosis and isnt even actually a problem because its all in your head. Add in a healthy dose of '...and this means youre a bad person and dont deserve help' and thats basically where it has been since BPD was 'discovered'. It was taken off my record when I was finally diagnosed as autistic but everyone who knows it was in my records at one point still treats me like an attention-seeking, lying child because youd better believe theres still heavy stigma within the medical community. It must be so much worse for people who atually have BPD because its not like they can have someone swoop in and free them like I did (though ASD comes with its own issues and I have to constantly prove both that yeah I am disabled and no im not a child now, which is fun).

[@feliciadannemann9871]

Got a narcolepsy diagnosis and during second opinion review, claimed it could Chronic Fatigue but unlikely. Didn't understand CFS before, thanks for the video!

[@NapinTerracotta]

I've only just been officially diagnosed with ME/CFS & I live on Isle of Man where ME is only recently been taken seriously but so far my specialists have been very nice & accommodating (I've been given physical aids like bath seat etc for free). Granted I am filling out a colour chart like you mentioned & they talked about slowly trying to increase my daily activity (based on what I told them I want to be able to do independently) but they seem to agree with not liking PACE. I've only done one app with them so far but I'm hoping this continue to help me. My symptoms showed during puberty but my family dr refused to diagnose me for years & when he finally told me I "probably have ME" tried to tell me there was nothing I could do to control it. I only got my diagnosis through asking for another dr after 10years of overexerting myself to the point of making myself bedridden for over a year(woo) & she immediately diagnosed me & put me in contact with these specialists. Also finally swallowing my pride & trying to get on benefits too. You have really helped me understand limits & to accepts bad days, I look forward to being able to balance my energy like you eventually 😎

[@Eva-dy9qy]

Thank you so much for sharing, I had no idea - as a person working in academia, I'm suddenly very grateful to be in the humanities side of thing because at least when we mess up our data, chances that actual people will face really awful consequences are relatively small. I'll make sure to pass on what you talked about among my friends and family!

[@maghouinbeg5011]

I utterly loved your comment about working in harmony with illness rather than battling it. You've just turned my brain upside down and shaken it about! This is going to be a game changer! A couple of different conditions can lead to my health being rather erratic. What I was able to do yesterday might be totally different from what I can do today. Instead of battling, and fighting, and being overcome with frustration, I'm going to start putting together lists of ideas of things I can do on different types of days. Having a list of activities/ideas I can work/play with is going to be great. Many. many thanks!

[@Mica1]

Thank you Jessica for another great and informative video! I have learned so much from you these passed months since I found your channel! (and not just about illnesses but clothes and makeup as well) My mother and grandmother are both diagnosed with Fibromyalgia, and during the years I've seen them misstreated and ignored by doctors, society and even by family members, that just thought it was all in their heads. My mother has during the years been put on all sorts of drugs, pumped full with morfine untill she could'nt stand straight, and been put through the most gruesom scrutiny by the most uncaring, cold, and uninformative people. Only last week my mother tried to make an appointment to have her swollen and painful knees looked at, and at first they ignored her refeering to her fibromyalgia. Tomorrow she is finally going to see a specialist and have her knees x-rayed. They suspect it is arhtritis. Considering that she has been diagnosed for more than 20 years by now, things should be different in how doctors and society view 'invisible diseases'. I look forward to your next video or post! Pass on all my love and happy thoughts to your dear ones! (p.s. Not a native speaker, excuse my bad spelling and sentence stucture. It's 1 am and I'm way to tired to think properly or activate autor correct on my computer. :P )

[@olgachronics3273]

This was great - I don't have ME or know anyone with it, but have Fibro and also have to deal with disbelieving doctors, people trying to convince me that their friend's cousin's friend had it too and did Yoga and she was cured.. its frustrating enough to be ill, we don't need the people who are supposed to be taking care of us, and have our health interests as their priority making our lives even worse!

[@tozerb]

I was diagnosed with fibromyalgia a few years back and that was used as the excuse for why I had hip pain and then dislocations and just generally felt like I was falling apart....I knew something was wrong and kept going to the doctor but they made me feel like everything was in my head and told me to do rediculous things to fix it when it turns out I have fibro, rheumatoid arthritis and hip dysplasia which needed surgery.....I felt like I was going out of my mind for so long because my doctor's just wouldn't listen to me because according to him I didn't know any better and was too young to understand even though I am a nurse myself and have medical training. Thank you for this informative video and shedding a light on this study. 💜💙💚💛❤️💖

[@m.w.kaplan447]

i was finally diagnosed with fibromyalgia when i was sixteen. "you just don't exercise enough" was seriously one of the most damaging and disheartening thing ever said to me, especially from the people closest to me. it feels like they're not only dismissing your disability but *blaming* you for it, as if i wouldn't be suffering if i just did better and tried harder. not only that, but i had exercised religiously for years prior as i overcame mental illness and body dysphoria; i was passionate about fitness and it was my diagnosis that ultimately ripped that away from me. i only ever STOPPED exercising because, even when i had the energy, the pain was too much. it would be more legitimate to claim that exercise can *Cause* fibro, not cure it. its even worse for female patients, who have even MORE shit dismissed as the cries of an overly-emotional woman; given that i was very early in my ftmx transition and had never heard of fibro, i was im*measur*ably lucky that my GP made the dx. its just....... yeah, deeply irks me, like you said. disabled people have enough shit to put up with without ableist nonsense on top.

[@alaube9212]

I am actually so shocked about how often I hear about doctors telling their patients their illness or pain is completely made up. My grandma was in hospital for a whole year because of the severe pain in her back. She had doctors tell her that there was no way she could be in that much pain and she was doing it for attention. I just find that so upsetting, because going through something like that is hard enough without people telling you it's all in your head. Love your videos and I'm sorry you had people treat you like that.

[@ceryswakeman1548]

Hi, I relate to this a bit. I have no diagnoses apart from migraines but I have had something wrong for about 2.5 years. It started with a headache that felt like a gunshot and then made me lose vision and black out. I continued to have unbearable pain, occasional vision and memory loss and regular blackouts for 5 months until the doctors hit on a combo that stopped most of the vision loss and blackouts. Then it was migraines which we have mostly managed to stem. What has never changed is the fact I have constant fatigue. Some days I find it hard to stand and others I'm just in a bit of a fog. I sometimes have memory loss and fall off grid. I don't mention it much. I've been to doctors for years and nothing seems to happen. All tests come up inconclusive apart from my heart rhythm being off and having lower than usual blood pressure. But today I'm stuck to my bed again despite having next to no stress in my life, being really happy (until I get bored in bed) and everything. They just assume it's psychosomatic. I don't bother mentioning to people I meet that I sometimes black out, can't stand or struggle to do things like type because I don't have a diagnosis so it's not real. Maybe I am making it up but I'm not sure how. I want to have energy again. I want to be myself. But this is just how it is.

[@dubiousenthusiast]

This may sound odd, but I just love listening to you explain topics like this. You are so well-spoken and knowledgable!

[@annaarts23]

For nearly six years I was told that my problems were properly in my head. It took a new doctor to get anything close to an answer about my chronic problems! I had to walk out of one appointment once (it was either that or I'd have swung for the doctor)

[@MLEbug]

I was put into a physio program at the hospital for building core strength. I gave them all the information that I could to alert them to my physical capabilities (as well as showing up with my walker) but they still started me on an exercise ball and worked me up through stairs, the rowing machine and cycling over the course of an hour before sending me off to sit through another hour of study with an Occupational therapist. That was once a week. It took me days to recover each time, and by the third week, I was in tears just trying to turn on certain muscles lying flat on my back. I ended up vomitting and passing out. Still, when I quit the program I somehow felt like I wasn't 'trying hard enough' because I was told by multiple medical professionals that this was 'THE way' (the only way) to get better. It was months before I was able to do do anything for myself again. I needed help walking, showering, etc. and I was trapped upstairs in my house, unable to use the stairs. I still get angry when I think about that and the many other things that doctors, physios, dietitians, etc. have put me through against all my better judgement and vocal objections.

[@vanillafox7943]

After 10 years of not knowing what was wrong with me, seeing countless doctors, being told I was making everything up, that I just needed to “try harder”, I was finally diagnosed with ME. It’s a long hard process and it’s scary. So thank you for talking about this, I have found your videos and it is so amazing to be able to find someone who has the same condition. Anyways, just wanted to say thank you 😊❤️

[@mrphoenie9788]

i was diagnosed with conversion disorder, due to doctors not knowing what i have and they thought it was all in my head. I am still in pain every single day but i am making do!

[@AnnikaVictoria24]

iKeyLimePie my sibling has been diagnosed with the same. It makes me so upset seeing how much he has to struggle to get people believe he is in pain. And that his pain and symptoms are REAL. Keep fighting, you’re amazing ❤️

[@travissall]

This was super informative and relieving to watch, thank you. I have me/cfs along with chronic pain, ibs and the slew of other symptoms, physical and cognitive that go along with that. Seeing this video has made me realize I was an unwitting subject of the pace study, and I’m not happy about it. I was in the graduated exercise group, filled out the questionnaires, did self scoring for pain and fatigue levels, and was told this was the way to get better. As it was put to me, the only way if I did not want to degenerate to a wheelchair bound invalid. I doubted this process from the start, using energy to create more energy when you have a complete lack of energy to start with. Those numbers do not balance out. I went with it, hopeful and optimistic anyhow, and my results were no improvement to worse off. Naturally I was blamed for not doing the program properly. I spent $1200 on a treadmill and put in hard work with every ounce of energy I had. Monday, Wednesday and Friday I did my exercising, increasing time walking as per the formula I was given. And Mon, Wed, Fri I accomplished nothing else but napping. Tues, Thurs and the weekend I spent recovering so I could get back on that stupid treadmill. I wasn’t doing the things that actually helped me, like painting, building small projects, studying/reading random text books to learn more and use my brain. I was sore as hell, exhausted and short tempered, I didn’t want to leave my room, and didn’t most of the time. I continued to be told to exercise and my results would get better, I did improve very marginally until hitting a complete plateau and wall that I could not get past, I understand why now. My doctor still tells me to exercise, but he has adapted the ways to much less impact and sensible things to mainly help slow atrophy and get in a little cardio for my heart condition (still unknown what condition, just symptoms chalked up to everything else going on) It is incredibly frustrating.

[@adiem3906]

Thanks so much for making this video I've been told time and time again to do a little exercise and keep increasing it but i always felt so much worse. I'm so glad its not just me thank you so so much

[@xbabyxginx]

My mum was diagnosed with M.E. and fibromyalgia a couple of years ago. She was also told to see a psychotherapist and to exercise more when she was first diagnosed (as the fibromyalgia came second). It was a very long process for her to finally get an official diagnosis for it.

[@InTheHoursOfDarkness]

I have yet to get an official diagnosis, but I am pretty dang sure I have chronic fatigue. My doctor has told me to exercise, last we spoke she specifically said "use it or lose it" as though I am some lazy ass person. Therapy has also been brought up multiple times, but as I am already seeing a therapist... but it's definitely frustrating. I started seeing my therapist before I got sick, so I am not sure how it is supposed to help any more than it already has. My father also likes to tell me that I should feel fortunate that I don't "look" sick. It's so much fun to be invalidated left and right. I just sent my doctor an article about CFS and exercise, and the CDC website that says exercise doesn't help CFS. *sigh* Thank you for this video though, and thank you for your other videos, it is really validating and helpful/informative. I really appreciate it!!!

[@jageenperson]

Aw this was such a cozy video, it feels like i’m hanging out with you irl. ❤️

[@clurdelune]

The shade in this video. 10/10

[@AshleighMuses]

Got feel like I have an essay in me. I apologise in advance if this gets lengthy :P I was diagnosed with ME/CFS when I was 12, and Fibromyalgia when I was 19. I had all three - GET, CBT and the whole forward planning thing along with a psychotherapist - all before I was 16. While CBT/Psychotherapy helped with the anxiety and depression I had due to being so isolated in my teenage life. It didn't help with the ME/CFS/Fibro whatsoever. Talking with someone different an hour a week was great, but it didn't help. I used to lie on those horrible little timetables/planners they gave you to tell them what you were doing - I think I stuck to the timetable for the first 2/3 weeks and then I was just feeling so miserable I did what I could, when I could. I still can't do any form of exercise. Even a walk exhausts me and lays me up for a few days! And I've been forced in to it because "it'll be good for me" - aside from the fact every time I did even the littlest activity I was then bed bound for 3 days until I tortured myself again because I was told "I'd get better". I didn't, not really. I had periods of better, but I always got knocked back after a cold or something. I'm aware I'm living with both conditions for the rest of my life - and I know how to manage my energy. I'm lucky, I've been fortunate enough to be able to go through uni and get a job which allows me to work part time. But I put everything down to hard work and a supportive family. As for doctors fobbing you off saying "it's probably that" drives me mad - I've had recurring pain in my hip for over a YEAR now and I've been to the doctor numerous times and I've been fobbed off a dozen times. I'm just at the point of putting up with it! Grrr. Anyway, I hope you have plenty of good days coming your way so you can get out in the sun and enjoy yourself! :) :) x

[@Sereniea]

Oh my goodness, I never realized you could film laying down, this is iconic. Thank you 💕💕💕

[@Miniyana]

I work with people with mental and physical disabilities and this frustrates me so much. It's so unbelievably maddening when doctors and other medical experts do not take their symptoms seriously. It's like the doctors do not understand that people with disabilities can have illnesses and symptoms that do not derive from their actual disability. It seems once a label has been put on a person, it's difficult to see past it.

[@juliedubois9241]

I have just graduated from high school and soon I'm going to study medicine and this video kind of broke my heart. I want to be a doctor to help people but I'm afraid that because of the system I won't be able to, or I will be mislead just like in this case. It hurts that Health System in so many countries tries rather to gain money than help the individuals and I know I can't change it alone. Thank you for the video Jessica, stay strong xx

[@TemeBriel]

I suffer with neurofibromatosis type 1 and I feel like there's something else wrong and my doctors just won't listen to me. I feel like we go round and round in circles trying to tell doctors what's wrong and they just won't listen to us. It's extremely upsetting. I love your videos they make my day better x

[@etherspin]

I would so love researchers to take their resources from PACE style trips to stuff like finding out what percentage of ME/CFS folks have some basis like EDS cause here in Australia that combo is making it hard to get government assistance cause the CFS makes me stuck (location wise) and unable to get to specialists to chase up EDS strategies especially with no work income to pay for those specialists and the Government views EDS as a disability that isn't a big deal and CFS as not a permanent disability We have a new-ish "National Disability Insurance Scheme" that is meant to help cover costs for things like mobility aids, gear for muscle support etc but I fear it will be utilised by people already well off enough to be paying fees for 3 specialists Just would love a big sample size investigation into how many EDS folks have CFS and how many CFS folks have EDS underlying it

[@phoebe543]

I got M.E when I was nine, when I was 13 a child psychologist forced me to do GET and when it started making me worse and I physically could not do what she was asking, she threatened to take me away from my parents and put me in a psychiatric hospital. I got lucky when she left for another job and I fell through the cracks and I wasn’t set up with a replacement. Her and the GET therapy she was giving me took me from being able to get up and down stairs ok and getting out once or twice a week to being completely housebound and mostly bedbound. I’m doing better now but have never gotten back to where I was prior to GET. I have also been traumatised by the experience and have a lot of anxiety around dealing with doctors because of what happened. Thank you so much for making this video. I feel all kinds of validated and that’s important when the whole world is gaslighting you!

[@detsnumber1]

Trial Data!!!!! I was sent to a shrink as it is "all in my head" but the shrink decided it is real pain. Not that its made a difference I have given up going to gp. I went once after dislocating well sublux to my hip popping my leg out and she said that's not possible whilst prodding me and exclaiming "oooo you are very loose and bendy" I left in tears. I get told to do more exercise... after explaining I want to but I don't get fitter I just get ill. I get told to eat healthier ....I don't eat as much as I look like I do. I'm just so done with it all but you always cheer me up so that's fine!!!

[@khart20]

Thank you SO much for this video!! I have a lot of trouble reading articles and stuff so while I was aware of the pace trial, your video helped me learn more. Also, hearing your experiences with ME/CFS was really helpful to me. I had some inpatient stays for rehabilitation for my ME/CFS a few years ago and they just made me worse and didn't apologize or seem to care and just brushed off my most distressing symptoms. After I stopped going the consultant implied that I didn't want to be helped and I 'didn't engage' with any of the team (I was extremely fatigued and overwhelmed and stressed and it just wasn't a good time for me). So. Kind of lost my faith in doctors after that. I hate so much that these kind of experiences are so common with people with this illness.

[@shalacarter6658]

Hello Jessica! I had never heard of this study. I wonder if it was only in GB? At any rate; I have had something similar. My physical disabilities all revolve around arthritis. So, I have RA in my neck, bone spurs in my neck, and possibly RA in my spine. Not sure. I do have the thing that causes your left leg to go numb and/or hurt. That is a nerve problem. I take Neurontin for that. But, I also have very thin discs in my lower back. It makes walking difficult to impossible. It sort of depends on how many pills I pop and how much liniment I can get onto my back. Long story now shortened. I want to a Pain Clinic. The nice doctor said he could do things that would help with the pain in my back and neck, but first, my insurance required that I take physical therapy. Yes, that would be similar to telling someone with a broken arm to lift weights with it. I asked him how long I had to do it and he said that three appointments with them sh owing that it was not working should be enough to make the insurance ppl happy. Hm. I have done PT in the past. It was useless. My husband had it after some surgeries and one of the things he had to do was walk on a treadmill. I was in terror of that. Oh, the other thing is that I called that Pain Clinic doctor the next day to get my pain meds sent over to his office and he said I had to make another appointment. What? I was just there! Plus, the hallway to get to his office is veeeeeerrrrrrrrry long and there are no wheelchairs or motorized carts available. So, in a nutshell, I can't get any pain treatment because first I have to be put into more pain to show that I am in pain. Yes. Cheers!

[@kathrynevans2346]

My mother was told for years that her symptoms of pain were to do with being overweight because she was considered "young" (54 at the time). She ended up needing two hip operations and a hernia removal. But now has to have both hips removed once again because the doctor put in metal ones despite warnings and her blood metal is very high with fluid on the mucles and could either die or become wheel chair bound if they don't change scrap the soccets then change her hip replacements to ceramic ones. Been let down badly by her doctors. The new generation of drs that are now helping are much better so far.

[@lifeonlowbatteries8153]

Beautiful plait (as an American that was a weird word for me to type) I have ME as well as mental health issues so "proper" healthcare is very difficult for me. Also, being in the US makes "proper" healthcare very difficult for me - "You're not trying hard enough" and "You're not sick enough" are common things I've heard. Oh well, back to the psychiatrist tomorrow. Thankfully I like my psychiatrist so hopefully she can help me because my body and brain have been doing weird shit lately.

[@WaitingForTheDoctor]

I don't have the same exact experience as you or with this trial at all but it echoes of similarity to my own experience with GPs. I have Generalised Anxiety Disorder and Depression and along the way (post these diagnoses) I've had a few minor health concerns separate from my mental health and every GP I've asked about these issues has just decided that it is all in my head...quite literally. I just want an answer and I never get one. I have to drag myself to doctors appointments monthly knowing that they don't care and just want to clean their hands of me and if its not my mind that they blame, they just blame my weight and tell me to lose some and it'll all get better...my mental illnesses included? I'm glad I'm not the only person frustrated at healthcare here in the UK though and I'm sorry that they did that trial and how they went about doing it too.

[@AmandaLordofDarknessCh]

I know this is a serious video, but your eyebrows look so good in this