ME/CFS - 2021NICE - a turning point becomes a debacle prologue

Watch the updated film here - • A dangerous model aban...
ME/CFS - 2021
NICE - a turning point becomes a debacle
(to be updated after the new ME/CFS guideline is published)
The Prologue to Dialogues for a neglected illness
The Prologue explains the current situation affecting patients with myalgic encephalomyelitis and chronic fatigue syndrome
Dialogues for a neglected illness is a website with a collection of videos addressing the challenges of ME/CFS from the perspectives of doctors, researchers, patients and carers.
The project is made by Natalie Boulton and Josh Biggs with a Wellcome Public Engagement Fund Award 2018-21
Explore the website and watch all the videos at www.dialogues-mecfs.co.uk

[@Bobhig100]

After many years NICE finally change their guidelines! After getting ME from a very severe coxsackie B infection I recovered to maybe 75%. A relapse in 2006 and hospital advice for graded exercise cost me my career. Who is accountable? No one of course!

[@aremedyproject9569]

The change was blocked.

[@Star5dg]

Semi professional football player, then triathlete, working full time, raising family. Valuable member of community. Now, unable to work exercise or be a good father. Anxiety they say. I've climbed highest mountain in South East Asia, I've bungee jumped etc zero fear and minimal anxiety

[@janaw514]

I remember that Outside magazine published an article on Overtraining syndrome. It sounds so similar to ME/CFS and Fluoroquinolone Toxicity syndrome, all of which point to the mitochondria.

[@juliebella1221]

Seems to take out the most active and brave of us out. You hear this over and over. Anxiety???? Depression??? We were the type that could find something to do on a rainy day and were the sunshine in other people's lives. Now we are the burden that can't die and can't live. If they allowed human euthanasia there would be lines for days. If an animal is this bad off they put it down. Deep sigh. Will our children ever really meet us? Know us? All they see is us feeling life is a curse. Honestly can say I wish I was never born. I KNOW the medical community has INTENTIONALLY done this to us. It's been a noted condition since 1970 and before - used to be called hysteria as it mostly affected women. Now maybe that more men are getting the almost all male doctorship since the 70s will finally deem it worthy of their time and not just an easy reason to dispose of women past their prime. How being in your 20s and 30s is past your prime I have no idea. Doctor told me it was just I was middle aged at 35 and should accept it's just getting old. He's been given several awards. It wasn't until I dropped my notable doctors name from another state that he stopped being so smug and actually paid attention. Doctors only cause years long more harm. I wish I never went to them. What else is there though? Big hugs to you and yours! :)

[@mdee860]

Thank you to so many who are "fighting the good fight" on my /& our behalf. We are too sick to fight for ourselves. Thank you, thank you.

[@teripeterson5709]

Truth

[@dianecarubia1099]

excellent video i wonder how many DRs will watch this?? i am 20 years me/cfs sufferer and thankfully i ignored the advice to exercise more. I knew it was making me worse. I did push through my life though as i had 2 young children, but i have now had to stop working in a NHS career i loved due to this horrible disease that has stolen my life. But I still have some hope, hoping this is the beginning of change.

[@medfreerecovery3022]

Make your doctor watch this, just send them the video link. If they are to lazy to watch a 10 min. video with clear and essential information and some highly reputable colleagues in it; move on and find yourself a new doctor. Keep the hope, there are people working on it.

[@lancemacdonald1819]

I contracted ME in 1983 and tried all types of therapy, it took about 6 years to get back to 95% right. I didn't even consider exercise as a therapy as after exerting myself a couple of times I was very very tired, it's as though your life force has been drained. I recovered by reducing all activity, reducing stress in little ways, eating a vegetarian diet and getting my stomach bacterial right. Once your stomach is right the rest of your body can start healing within.That worked for me , I understand it may not work for all ME sufferers. My love and prayers for all ME sufferers as I know what you are going through.

[@rbar3623]

I used to roll my eyes when my doctor would tell me to exercise more. How do you exercise when you can’t even move some days.

[@RMT192]

Lol.

[@websurfer5772]

I hate my doctors and they hate ME.

[@Manageode]

I wish this did not have the piano playing simultaneously with speech. Or that the music was very much lower in volume. Its too much for my brain to try to filter out.

[@elizabethcarver5151]

Hear hear! They know CFS patients can't manage sound overload and then they go and do that!

[@madamshome]

I have been an exercise addict my whole life & it has taken many bad crashes to concede that even graded exercise can be toxic to ME sufferers. In this case, I would prefer the shrinks to be right, because a simple cure would be better than the complex research challenge of ME which means that at 60, a useful treatment is unlikely to occur in my lifetime,( other than living the life that's more limited than some 99 year olds.)

[@Bobhig100]

Yes agreed. I would prefer psychiatrists to be correct but like madamshome, I've had bad relapses from exertion and learned the hard way. With any illness which is not properly understood, the emphasis should always be on caution.

[@madamshome]

@@Bobhig100 im sorry for your ordeal. Unfortunately, with ME, we see m to have swung from the extremes of preventing sufferers with diseaases with no known cure, to be allowed with informed consent, to take experimental therapies, to being used as lab rats for the psychiatrists. I am still shocked that they have been able to surpress the revised NICE guidelines. There is a hypothesis that you may reach full recovery with an individualised adequate amount of rest. Conversely, each time you significantly go outside your energy envelope, the ME status may be reset to day 1. If this theory has some merit, how much damage is being done to patients engaging in GETS, particularly the over enthusiastic adopters who believe that its their best chance of a cure. Best wishes

[@barbarateresarhiannonsreal1756]

There are many more of us who have me/cfs because we haven't been diagnosed. I've spent my life dragging myself to work & back home to sleep. My symptoms became much worse after getting Covid-19 from a work client or at home. I "fired" my nurse for gaslighting & not updating my medical files. I've filed for disability, was looking forward to retiring & my "golden" years. I believe mine started with infected tonsils as a child...my Dr. refused to do a tonsillectomy. As a young adult in my early 20's, in the 1980's my dentist said my tonsils were so infected he refused to clean my teeth & said I could die from this infection. I had the tonsillectomy, but years of being chronically ill & stressed have taken it's toll. Having me/cfs has robbed me & others of our lives. Someday soon, the medical community will "catch-up" & provide some much needed assistance.

[@jameshunt1516]

That's very sad to hear I hope you get better soon. Very sad that so many still don't understand this awful disease. I'm in my 20's, have had CFS for nearly five years now, no pain just constant fatigue, some days worse than others. I am lucky enough to live with my parents who are understanding and I don't have to work I get £400 in disability benefits per month.

[@barbarateresarhiannonsreal1756]

@@jameshunt1516 yes, that's great. It allows you to focus on yourself & get better. Best of luck to you James!

[@penelopelambson6794]

In spite of still no cure, at least we finally have a credible diagnosis. So many of those who got sick in the 1980’s not only suffered from the disease symptoms, but from almost total lack of support or interest from the medical community or the general population.. Considered fakes, hypochondriacs, maligners, or depressed and hormonal, living with this was extremely difficult. The general feeling towards us was “ Get well or die!” Having genuine credibility at last is miraculous to us. Videos such as this are very helpful to share with those who are still skeptical or are interested. Thank you!

[@paul2019monte]

The cruelty we have suffered just from the fact that we were refused a proper diagnosis and therefore society would not accept our very real illness. I get that there isn't a "cure" but why the denial and abuse? I have struggled through but it didn't have to come with a side of suspicion and gaslighting.

[@mdee860]

@Sue & Penelope - that's because it was labeled/listed as a Psychiatric Disorder for so long & because of that, research money was denied & medical students were not taught about ME/CFS. To this day, most Drs. in America do NOT understand this multi-system disease,, nor its' severity. There needs to be a Public Awareness campaign & it needs to be MANDATORY education in every medical school - esp. those that accept Government $$$.

[@paul2019monte]

@@mdee860 This is something that Jennifer Brea was addressing when she took her film "Unrest" around the US (and I believe Britain & Australia) for public screenings aimed at health care workers. Their responses indicated that they had no idea prior how devastating and widespread this is. Spreading public awareness to people that hadn't been taught anything about this illness. What an incredible effort. Particularly while ill herself. I have a close friend who retired from family practice medicine after 40 years. He had never been informed of any of this both in medical school and during his practice. Of course that parallels the fact that I have been ill for decades with no understanding or a name for this. The psychological damage of that is huge. *sorry for poor syntax. It's one of those days.

[@mdee860]

@@paul2019monte - Yaaass! I had to completely educate my very smart ( not joking) Dr. Although she is so bright, she was not taught anything about this in any of her Ivy League College(s) & Universities. After becoming a Dr., she continued her education & not one school covered ME/CFS. Until you've been a victim of Dr. "Shuffling" i.e.: Passed from Dr. to Dr; "Not in my wheelhouse" or, "I know you're sick, but just don't know with what" - no one can comprehend how invalidating, exhausting & frustrating it is.

[@barbarateresarhiannonsreal1756]

@@mdee860 Dr. Shuffling? That's what it's called??? THAT'S WHY I'VE BEEN REFERRED TO 24 DRs in 24 months? WTH? I'm done! ME/CFS brought on by chicken pox in the 1960's when I was a toddler. Covid-19, Longhaul Covid, & worsening symptoms of ME/CFS & my Post Covid just suggested CBT! Now, I'm not a Dr. BUT, thinking my way out of this is NOT going to help. That like CBT for Cancer. DOCTORS PLEASE LEARN ABOUT US. WE ARE YOUR BREAD & BUTTER. WE ARE HELPING SEND YOUR KIDS TO COLLEGE. WE ARE THE REASON YOU CAN AFFORD A TESLA! WE ARE HERE AND WE WILL FIGHT FOR OUR LIVES IF WE CAN GET OUT OF BED OR OFF THE COUCH. HELP US!

[@pandypop1]

I wonder if we'll ever be able to figure out why our bodies can't produce energy as they should and why M.E is often accompanied by fibromyalgia.

[@TEBLify]

I keep seeing fibromyalgia coming up in the same patient groups I'm, but given that the symptoms are overlapping I usually chalk it up to a doctor writing the diagnosis they are familiar with. Personally I'm hopeful that the treatments to be tested for long Covid will end up working for us as well, there's certainly enough patients and money to ensure it has a path to market.

[@shellbell8062]

There is a neurological element to ME - like a stroke victim the body has gone into shut down and the brain is no longer telling the body to produce energy via the mitochondria.

[@explore_with_sagan9596]

In my case, it's due to mitochondria not functioning properly. I take coq10, it helps some with energy but not a miracle.

[@mdee860]

@@explore_with_sagan9596 - what brand CoQ10 & how much do you take?

[@abstuli1490]

There is already a new, little-known disease that can explain all the symptoms known from ME/CFS. Mast cell activation syndrome (MCAS) is a new, little-known autoimmune disease where mast cells become hypersensitive and release too much and the wrong type of mediators. Mast cells can release more than 1,000 different types of mediators, including all types of Growth factors, Proteases, Leukotrienes and Cytokines and chemokines. Many of these mediators are inflammatory and elevated in ME/CFS patients. MCAS is suspected to be linked to ME/CFS, POTS, IBS, Fibromyalgia, Post-Lyme syndrome, CIRS, MCSS, IC/BPS, PTSD, GWI, ADHD, Autism, Kounis syndrome, Hypermobile EDS and many more. For more info look for. Mast Cell Activation Syndrome: An Alert to Psychiatrists The Role of MCAS in Long Covid | With World Leading Specialist Dr Lawrence Afrin Dr. Tina Peers from UK Discusses the Management of Long Haul Syndrome (Long Covid) Mast cell activation symptoms are prevalent in Long-COVID on NCBI Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders? on NCBI Mast Cells and Irritable Bowel Syndrome (IBS) on NCBI Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrome on NCBI Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association on NCBI The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome on NCBI Post-HPV-Vaccination Mast Cell Activation Syndrome on NCBI

[@nicholas6823]

Very good summary of the current situation regarding NICE. Thanks. We are all watching what happens next.

[@barbie3139]

thank you for standing up for truth and for helping those who are hlelpless among us. For those who can't exercize, being told by a doctor that either their symptoms are psychological (despite scientific studies showing otherwise) or that they just need to excersize, is really patient abuse.

[@Ex-expat]

Yep, GET was established globally as the norm. Insane. I was told the same and thankfully ignored it as just going up one flight of stairs was too much, and the one time I did some minor "exercise" I was done for 2 weeks and peed on a freaking bottle as I couldn't get out of bed. I was wheelchair bound and finally slightly mobile to today 6y later being able to slowly walk 1km thanks to a doctor who worked out the right meds and fine tuned them. My key message: don't give up, and the days you can do something, do to max 50% of your capability. 2nd: Get a Garmin watch to track your "stress" Level and body Battery. That was what helped me seeing how my body felt. Game changer!!

[@soggymoggytravels]

There was an error in this video. When one of the interviewees said that there is no biomarker to diagnose this disease, in fact there HAVE been multiple studies involving brain scans and blood tests following exercise that reveal distinct differences.

[@lav3rn3h82]

Do you have a link to these studies?

[@explore_with_sagan9596]

Organic acid test can detect mitochondria dysfunction. In my case, it's mitochondria dysfunction.

[@barbarateresarhiannonsreal1756]

@@explore_with_sagan9596 Really?! That's a huge start! Good luck!

[@geraldking4080]

I got it at age 21. Now I'm 68. I was misdiagnosed for 20 years. I was a backcountry skier & climber. Trying to maintain an active life & physical conditioning caused immeasurable harm.

[@hals1fineday]

I also got it when I was 29 and I am now 58. I have to regulate my exercise and mostly it's walking, to stay in a tolerable zone.

[@Agi1969]

Thank you for this very informative summary. I have ME since 10 years. I get absolutely no care from my GP surgery, only Tramadol to manage the pain which they try to withdraw from time to time and I have to fight to keep. Tramadol is the only thing that makes my life bearable when I am in a crash out.

[@jameshunt1516]

Terrible you should have at least been offered CET or GET like I did.

[@paul2019monte]

That is just cruel. Nothing like having what little relief you get being threatened for no reason.

[@teripeterson5709]

First I had a case of Mono/EBV in March of 2020! After many months of slowly regaining a bit of energy & ALWAYS ENDED UP WITH MANY CRASHES! In 2021 was finally diagnosed with Post Viral Fatigue Syndrome- Today I’m laying down on my sofa Trying To Recover From Another Crash! FYI; I haven’t been able to work in 2 yrs

[@hellowp1345]

What a brilliant video.

[@banzobeans]

Ideas for anyone watching this: * Ozone therapy. * Ketogenic diet. * Fasting * LDN (Low Dose Naltrexone) * Trauma therapy. e.g. Somatic Experiencing, EMDR.

[@elizabethcarver5151]

Idea for people who offer unsolicited quack therapies to chronically ill people: go and boil your head.

[@sunshinenOJ]

2:03 Excellent excerpts on ME/CFS

[@banzobeans]

2:55 "These patients have an inability to create energy for physical and mental activities that they want to do."

[@debbiedausch7259]

You can’t move . You try to move. Your body will not move

[@OscarPerez-ig2vw]

RIP Graham

[@jeaninardi8538]

So after this beautifully done vid, they sign off saying to check with experts and list exercise physiologists.

[@jamesgordon8867]

Photobiomodulation with graded exercise

[@potsbottlejars5551]

Let's not forget how B12 aids recovery.

[@StealthyNomadica]

Diabolical.

[@banzobeans]

3:04 "On average, people with ME/CFS have lower quality of life compared to people with multiple sclerosis, rheumatoid arthiritis, cancer or depression."

[@unyxpectedtrinkets4616]

*tries not to cry, cries a lot* When will the medical field decide to help people? 😭 We NEED research. Every time research is done, they find there IS evidence. I’ve had doctors write me off for decades and it has directly negatively affected my health long term (nearly killed me). Chronically ill patients are dismissed as drug addicts, lazy, or that they just have a bad perspective.

[@teripeterson5709]

Well said

[@michaelpond813]

I ve had. C. F. S. For decades. I've found that. Taking. Co q.10. Omega three Neuro mag. Zinc. I. Carnitine a good multiple and v D3 2000. I. U. A good veggie diet with protein.

[@travisinLA]

Anti viral herbs then brain and nervous retraining is best I’ve dealt with it for decades from the chicken pox

[@marieharris4682]

I got my test result yesterday and I finally tested negative to HSV 2...., It really feels good to have my life back and I am so thankful to Dr. Okiti for helping me out..... If anyone reading this comments wants to contact Dr. Okiti for questions or help

[@sunshinenOJ]

3:20 Share with your doctor: doctorswith.me