ME/CFS - An Overview of an Underappreciated Disease

[@StrongMed]

Most of the individual videos in this series on underappreciated diseases were inspired by specific patients I had taken care of at some point. Instead, this one was inspired by science KZbinr Dianna Cowern (a.k.a. Physics Girl), who developed a particularly severe case of ME/CFS attributed to SARS-CoV2/Long COVID, and sadly remains very ill. The recent increase in ME/CFS cases attributed to COVID has led to increased interest in awareness and research, so after decades of a relative lack of progress in developing disease-specific treatments, there may be fresh hope on the horizon for patients and their caregivers. You can learn a little about Dianna's story here: kzbin.info/www/bejne/rKrHmJ55eL2ViqM

[@AdrianFacchi]

I was deeply shocked after seeing Diana's health update. Thank you for making this video and helping me understand this desease better.

[@dirtywashedupsparkle]

Dianna was why I came to this vid, so sad to hear about her condition. But hopefully more people will be aware and will know more about what to do.

[@CaroAbebe]

Cognitive behavioural therapy isn’t misunderstood by the patients: it’s the therapists and psychiatrists who very often believe that ME isn’t a physical disease.

[@mrsmacca126]

EVERY practitioner we’ve seen, has zero interest in learning about- let alone treating- ME/ CFS.

[@dannybell926]

Seems like they just wanna tell you stop being lazy and you'll be fine

[@riohenry6382]

Ask them to treat your symptoms. You’ll have much better luck than asking them to treat CFS

[@tammyrobinson1613]

​@riohenry6382 actually not true. Tge symptoms come mostly from neurological/ nervous system. These effects immunity, pain, hormonal, etc. I've had better luck treating hormones, and nervous system and brain inflammation. Actually getting more good sleep

[@Drea62621]

So true I’ve been to over a dozen and no one can do anything. Ugh!

[@Trthsker24]

Go lion diet. Nothing but meat salt and water. Check out Dave @nocarblife

[@Tess3996]

I got cfs after a viral infection with the Epstein barr at the age of 30,its been now 33 yrs from the onset of this curse and the last 3 yrs have gotten worse ,the fatigue, pain in muscles and joints and brain fog .Most doctors refuse to identify it but shall I say I was lucky enough that 2 yrs from the onset of the illness I saw a consultant who after ruling other illnesses told me he had just came from America and seen pt's with these symptoms its called cfs (I'm from Malta ) I'm now mostly housebound, can hardly walk ,take me days to clean one room. With little help and no end insight ,my life has literally been snatched away...I know that only dead can realize me from it .

[@Truerealism747]

Try ldn it helps fatigue but not pain

[@angelahahn809]

Your not alone I promise don't give up ❤

[@hollyc9144]

People think I'm lazy and don't believe that I have this even though I've been diagnosed with it. My own family treats me like sh*t because they think I'm exaggerating just being tired. "It must be nice staying home all day and getting to take naps."

[@ophefer1078]

I know the feeling, try get a test done via endocrinologist or neurologist who will accept sending you for a neurospect scan. They must inject you with radioactive substance which will show on the photos which part of your brain is missing blood circulaiton

[@pauladime6307]

I’m so sorry 😢

[@cbessinger]

Same. I just had to write a letter to my family member today about this. But please look up the guaifenesin protocol. It will reverse it. It's phosphate retention ❤

[@Jess0212]

I have a 2 day CPET that proves that I have severely reduced functional capacity, that I go into my emergency energy by just walking, and that I’m not malingering, and I still have had to deal with family & friends saying that stuff as well. I haven’t been able to work in years. When I was healthy, I was an over achiever, I was vivacious, and was incredibly goal oriented. Now, I’m mostly home bound. These people have seen what’s happened to me after a bad car accident years ago (which was my trigger) and yet they still call me lazy, tell me it must be nice to stay home all day, and ask me what I plan on doing with my life 10 years from now. It’s infuriating when healthcare professionals rarely take us seriously but it’s worse when loved ones do as well. There is very little support with this condition.

[@incognito595]

IGNORE THEM. WE KNOW THE TRUTH.

[@JustMeUpNorth]

I’ve had this for fourteen years. I’ve had periods where I can walk a little, and periods when all I can do is lie flat in a dark room and try to keep my brain as calm and relaxed as possible. The NHS told me, *today*, that I - in the middle of symptoms where I’m in the mostly lying down in the dark stage - should be doing a little more each day and working to build up my exercise tolerance. I just despair with ever having them understand this illness. I’ll be back doing more than I probably should earlier than I should because I’m human and I want to live my life. I don’t want to lie flat trying to preserve what energy I have, but I know this is the only way I can ensure I’ll be better able to function, faster. They keep pushing ‘don’t rest’ during illness flare-ups, and it drives me bonkers to think others may be getting sicker from following that ‘advice’. Pacing is absolutely helpful, but this NHS obsession with making people constantly do more is a nightmare. Of course, the NHS website is auto-pasted under this video by youtube 😔

[@StrongMed]

Thanks for your comment, and I'm sorry to hear about your experience with doctors. Unfortunately, and you imply you know this already, I can't control those "get more information" links that KZbin puts under my videos. I don't think I can even turn them off.

[@JustMeUpNorth]

@@StrongMed I know, and I’m sorry - it must be super frustrating as it’s automatic by KZbin and can’t be changed. Hopefully one day the NHS will improve its ME information, at least!

[@cbessinger]

It's phosphate retention. Look up the guaifenesin protocol ❤

[@JanetteFisher-w6p]

​@cbessinger Have you tried it ? Are you better now? How long did it take for you to recover?

[@JanetteFisher-w6p]

​@@cbessingerThis is what I found about that protocol,The protocol involves three parts: titrating the guaifenesin dosage, avoiding salicylates, and following a low-carbohydrate diet if the patient is hypoglycemic. Guaifenesin has not been approved by the FDA for the treatment of fibromyalgia, and the protocol has not been shown to be effective in clinical trials.

[@Zebo262]

I'm not sure CBT is the best method of therapy for a lot of people experiencing ME/CFS. It is time and goal orientated..... That is quite difficult to achieve with all the symptoms experienced with ME/CFS. Though it could be dependent on the severity. Exercise also used to be a method of treatment for ME/CFS. Difficult to do when everything makes you feel exhausted constantly, including just walking up.

[@zacharyzimmerman5721]

Ya therapy does nothing to help the illness for me

[@JodieHowell-o9j]

Graded exercise therapy is absolutely outdated and dangerous for ME/CFS. We now know it actually causes more harm to them. The guidelines have changed and exercise is no longer recommended. The only way to “heal” during PEM or a crash is aggressive rest.

[@kimcasault2582]

This is really well done, thsnk you. (From a ME/CFS patient)

[@faizanashraf6168]

Help me😐​@@mikecarey1990

[@GooGooEYES-yb5uu]

​@@mikecarey1990Mike I would like your help as well, please? Although I have lived with the condition for 40 years I have not gathered a accumulation of note regarding concrete things to do to help my body and my mind manage living with chronic persistent fatigue. I saw your comment above and enjoyed your video and the way you presented the information. I'd be very interested in working with you if you can direct me to a website that handles your clients or potential clients. Thank you Mike

[@stephenlepage]

This is probably the best overview video on ME/CFS I have ever seen. It is on point for dozens of key issues. I'm keen to hear your views on the emerging research on Long-COVID, ME/CFS and microclots in the blood, and ME/CFS being described as a haematological issue.

[@BoiseLou]

For those still wondering, there is good evidence that this is a specific, unique illness that really does exist. Some of the best evidence is the fact that when strict criteria that include a thorough description of post-exertional malaise, the defining feature of ME/CFS, are used the vast majority of patients have dysautonomia. Dysautonomia is thought to be the driving force behind post-exertional malaise. It would have been good to see a heavy focus in this video on dysautonomia because it plays such an important role in the development of ME/CFS and is a driver of so many symptoms experienced by patients.

[@wolfpytlak2786]

I hope post-covid research helps us to understand what is going on with these patients, then again, i'm not sure if i've seen many cases of that lately, altough maybe it's because i'm not looking for them.

[@websurfer5772]

My white blood cell count was extremely high when I first came down with ME, or at least EBV. I may have had ME all my life really. There are signs of that. My spinal cord in my neck and my brain often feel very inflamed after a bit of exertion.

[@carolcliff5150]

Thank you for trying to shed light on this condition.

[@michelenichele294]

Thank you so much for explaining ME/CFS and, as you always do, so brilliantly. I have been wondering about this disease for years. Thank you for covering it so well.🙏

[@strigiformthunderstorm]

Going on 10 years since I got sick and still failing to find doctors who will actually try to treat me.

[@Elysian777]

It's not 'underappreciated'. It's been shelved. Very little research has gone into it, like most diseases that affect women more than men. There are a lot of studies and statistics that have crunched the numbers on this to prove it. The reasons why: 1. in the past women weren't as important to the economy (leaders/labor). 2. women were blocked and discouraged from the fields of research and the managers who made the research decisions. Let's have reality based discussions- even if 'controversial'.

[@imbhm]

Your contribution to Medicine and Health sciences is unmatchable! Watched your complete EKG series and other stuff! ❤

[@riohenry6382]

For me the worst symptom is the severe pain. I used to get migraines before I got CFS. But the head pain I feel constantly since I contracted CFS is at another level altogether. I spent 3 years in bed before I found a doctor who was willing to treat me. Things are much better now but I’m on a high dose of opiates every day. And if I step outside my envelope, I’m back in bed in pain, vomiting. Yeah, the nausea and vomiting were awful too. I lost 30% of my body weight before I negotiated a shot of Gravol every am from my GP. After a few months of that, I could control the vomiting just with gravol pills and other stomach meds. I know for me it was a viral stomach bug that started it all. I had 2 rounds of Cipro and my autoimmune tests were negative. The best way to describe it is that I got a stomach flu in ‘05 and I’m still trying to recover :((

[@Truerealism747]

Muscle pain is my worst symptom to

[@Truerealism747]

Have you also been checked for hypomobility Asperger's ADHD the latter ADHD meds will help I've found out after 26 years of this desease

[@riohenry6382]

@@Truerealism747 I’ve been in therapy for 20 years. Someone's been studying my brain for years. He told me that CBT et al was NOT going to help me when that was all the rage. I’m very thankful for the honesty I received from all my doctors. But there’s no ADHD or hyper mobility there. I’m getting stiff as I age if anything. But thanks for the suggestion

[@JustMeUpNorth]

I am so sorry. The nausea is evil. Ginger tablets help mine somewhat but there are days when I can’t eat at all and no medications help. I have a mixture of low-level long-acting morphine and muscle relaxants that help, but you’re right, just a bit over the day’s levels and it’s really not a nice experience. I know it’s nowhere near the level of a broken bone or labour (I’ve had both more than once), but it’s the constant nature of it that’s the issue. When pain is unending it’s a really negative factor in your life. My ME started with a flu-like illness too. Summer holidays, I was a teacher and decided to do voluntary work while school was out. Thought it was weird that I wanted to have a Lemsip drink in the Summer, but I felt really quite poorly for a day or three. It picked up, I started to feel okay for a couple of days, then it literally felt like someone just pulled my plug out. I had to physically hold onto the counter at work to stay upright. I remember getting home and going to bed and sleeping for twelve hours straight. When I woke up I felt like I’d done pre-season sports training, when I’d done nothing of the sort. Like an idiot, I thought I needed to work through it, or it was ‘just depression’. I was bedbound by Christmas. It’s truly scary how quickly this illness starts and nosedives if you don’t rest when you’re sick. I hope you can find some level of functioning that allows you to feel okay. I know it’s not easy and it’s not really down to us as to when our levels change, but everything crossed for you to at least find some comfort. ❤

[@BoiseLou]

@StrongMed After reading some of the report you included in the link (I struggled to get through the whole thing) my own experience of illness may shed some light on how the original description of ME could be related to newer definitions of CFS. I have had signs of dysautonomia pretty much my whole life, beginning with when I started walking just past the toddler stage around age 2-3. I have hyperadrenergic dysautonomia and also had the typical dilated pupils caused by this from an early age. The first symptoms I experienced were muscoskeletal in nature. These were painful stiff leg muscles and leg weakness. Dysautonomia can cause pain and muscle weakness and mine was consistent with dysautonomic weakness in that it came on gradually with use. I would also wake up in the early mornings with incredible stiff calf muscles that were also painful to walk on. At the time we were told it was growing pains. To this day I have the same pain and weakness except that as I grew larger it spread, becoming a body-wide issue. Around age 12-13 my illness morphed into ME/CFS. I started to develop PEM, a severe autonomic sleep disorder, as well as neuropathic pain. The early diagnostic description of ME, therefore, could all be explained by what is primarily a dysautonomic disorder. When diagnostic criteria for CFS or ME/CFS include a thorough description of post-exertional malaise the vast majority of patients test positive for dysautonomia. This is thought to be the driving force behind post-exertional malaise.

[@annayeung5587]

😢 thanks a lot for this inspiring video! I suffer from Covid two times. I can’t tell how tired I am both physically and mentally even those runny nose, sore throat and cough are gone! Every day, I feel I have fever, but the temperature is just normal.

[@feef6098]

Chronic and acute pain, weight gain or major loss, all ME people were previously highly motivated. And…and…..and

[@0000song0000]

Lately, i feel like we were just hightly intelligent youngsters, high on stamina... A dozen things to do (and done) daily... Then the original youngster stamina runs out and suddenly we feel the weight of all the things we did... We cannot create nearly as much stamina as adults (inneficient ATP?) so we get frustrated and all the energy we used to focus on doing 100 projects, is now focused on analyzing the pain. 😅

[@ixchelkali]

​@@0000song0000, no. At least two facts argue against that hypothesis. One, people who get ME/cfs are not all supercharged, type A personalities before becoming ill (though some are). It strikes people of all personality types in all walks of life, including Buddhist monks. Also, many people come down with it in middle age, many years after their youngster stamina has passed. ME/cfs is not a disease of people who are preoccupied with their health. It is a profoundly disabling physiological illness affecting multiple systems of the body. People with ME pay attention to their body’s signals because it's the best tool available for managing their symptoms.

[@Truerealism747]

​@@ixchelkali17! After a fall.mine started my father s started after a virus 43 now muscle pain worst symptom now ldn help d.fatigueni now diagnosed Asperger's ADHD heds genes for it

[@Jess0212]

I was a very active, overachiever before I got sick. I was very goal oriented and had been working toward my dream career path since I had been a young teen. I made positive life choices and volunteered. Worked at jobs that most people my age would never get hired for (911 call receiver, Correctional officer) but I was highly motivated and eager to learn and excel. And I really wanted real world experience, in addition to my volunteering of the field I was interested in and going to college, before I went to my dream job. And then, I got into a bad car accident, and the rest is history. I haven’t been able to work in 12 years. I have a 2 day CPET showing my significantly reduced functional capacity. And now I’m mostly home bound. My life is pacing and more pacing now.

[@Madeline-sn9fv]

@@Jess0212one gets very tired just because they have to live this type of life! Pacing, etc.😢 .

[@tordlindgren2123]

I've been trying to get a diagnosis for quite some time now. It is quite difficult because doctors and such seem to be working against me on that. I think/hope it's cfs, because what is left on the list to check for is somehow worse. At any rate, where I'm at right now is that i can no longer work, and social security people are now forcing me to join an exercise program (i love working out, and would really like it to work like that. However i sometimes crash from a walk, and i doubt the extra stress helps me with that). I just wanted to stand in line to get in where the doctor ive been reccomended by someone with similar problems work at, because i know a lot of doctors seem to pretend this group of illnesses doesn't exist. I've been almost homebound since last autumn due to arthritis advancing and last winder being very wet, and i had to stop working halftime last spring. For the record I'd much rather work and not have all this quarreling and so on, however i recognise that it's not an option.

[@Fiawordweaver]

Thank you. Your presentation is so appreciated. I live in fear not knowing what’s stole my life for the last 3 years. My Hashimotos is blamed by the medical community. I was diagnosed in 2005 with hashimotos, so why the severity and bedridden status now?

[@zacharyzimmerman5721]

Illness has robbed me of my life.

[@beckyraskin3280]

I am now 71 years old. I've had all the major symptoms you've described here since I WENT THROUGH MENOPAUSE. I'm convinced that what I need is HRT. Estradiol patches are available by prescription, so I'll try it.

[@CaroAbebe]

Patients have been known to get much worse when exposed to “sleep hygiene” practitioners. No sleep during the day, stick to an 8 hour sleep schedule… what can you expect?!

[@gg.6633]

We need to nap whenever we please!!

[@1981ranjan1]

Great information...thanks for such a knowledgeful video on such common yet less understood clinical condition

[@AC-it2ue]

@LCMEBillboards on Twitter are pushing for government funding towards clinical trials to get treatments for this illness and Long Covid. First billboard is up in Bournemouth, England.

[@alexmay7250]

I had something kinda like this after I got really sick in early 2020. For about a year and a half maybe longer I was just incredibly tired all day long had constant sore throats and would just feel wiped out after doing simple tasks. I also had this intense brain fog that made it incredibly hard to focus. I ended up recovering about 94% which is pretty good imo

[@BoiseLou]

People with ANCA vasculitis sometimes have a co-morbid dx of ME/CFS.

[@Dreadtheday]

I am being studied currently. I have cfs, fmf, primary immune A and G deficiencies. I have raynaud, dermographia and severe urticaria since birth. Ty for the information. Also, I am a *1/*17 rapid metabolizer which makes me tricky to treat. Some meds work too well and others seem to do nothing. I hope the data they glean can help others . I AM 42.

[@Truerealism747]

Are you hypermobile it's looking need to add Asperger's to eds

[@abstuli]

​@@Truerealism747 Autism spectrum disorder (Asperger's) and hEDS is linked to Mast Cell Activation Syndrome (MCAS). From the National Library of Medicine. • Mast Cells, Stress, Fear and Autism Spectrum Disorder • The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome Mast Cels hEDS. The most common form, hypermobile type EDS (hEDS) and its variant, hypermobile spectrum disorder (HSD), are correlated with rheumatologic and inflammatory conditions. Evidence is still needed to determine the pathophysiology of hEDS; however, the association among these conditions and their prevalence in hEDS/HSD may be explained through consideration of persistent chronic inflammation contributing to a disruption of the connective tissue. Aberrant mast cell activation has been shown to play a role in disruption of connective tissue integrity through activity of its mediators including histamine and tryptase which affects multiple organ systems resulting in mast cell activation disorders (MCAD). Mast Cels Autism spectrum disorder (including Asperger's) . Many epidemiological studies have shown a strong association between autism and mast cell disorders. Numerous people on the autism spectrum experience mast cell activation which manifest as differing symptoms. Treating mast cell activation can bring about improvements in core autism symptoms.

[@robertklund3201]

I'm no doctor, only took high school science; but could the cell's mitochondria have anything to do with this?

[@kelliemurphy7933]

Absolutely, the mitochondria definitely does have something to do with it. Unfortunately there is so little research that no one knows yet just how that works although they do know that ATP is also involved.

[@Truerealism747]

​it's highly comorbid with autism ADHD ocd heds for which I have all I've had fatigue from birth ling before my trigger for CFS 27 years ago and thus is in alot albeit just diagnosed 27 years later

[@JustMeUpNorth]

Apparently so. That’s the basic reason why people with ME cannot rebound after exertion. Dr Byron Hyde was very good at researching the way ME affected cells and the ability of the heart to cope with the illness.

[@iknovate]

Brilliant! I've always suspected that the condition label was simply a catch-all. Now what?

[@thjbird]

I’ve had it my whole life. I suspect that there is a strong genetic possibility. As I get older it’s getting more difficult to deal with. Doctors always tell me that it’s depression. I don’t doubt that there is depression, but that’s like telling a drowning person that their problem is that they’re depressed. It’s a very difficult malady. Most “normal” people probably couldn’t imagine what it would be like.

[@peterwu8471]

This is very similar to how I have been feeling for months... after EVB.

[@michele21auntiem]

20 yrs now w/ this.

[@Truerealism747]

​@@michele21auntiem27 years now after a fall.muscle pain the worst now intake ldñ are you hypermobile

[@Truerealism747]

​@@michele21auntiem you have chronic muscle pain

[@Madeline-sn9fv]

42 years.

[@mangowu3243]

Definition power is real power. Semantics is worth fighting for, it defines people's biases.

[@mairejohnson18]

I really appreciate your series on underappreciated conditions. As someone with EDS, dysautonomia, MCAS, and a list of co-occurring conditions three pages long, it is really nice to have these videos as references to share with people who ask for more info. Any chance you'd do a video on arachnoiditis in the future?

[@mairejohnson18]

I have a whole list (as you can imagine) of things I'd love to see more on from a source I trust LOL!

[@StrongMed]

Thanks for the comment and suggestion! Unfortunately, the list of great suggestions from viewers gets longer faster than I can produce these videos. I'll add arachnoiditis to the list, but I won't be able to get to it in the near future.

[@mairejohnson18]

@@StrongMed Thank you! No rush! I can only imagine...!

[@Rhesvhil72]

Wow this is great informations this channel is very informative

[@tyronebigsby2169]

You’re such a badass dude, definitely one of my idols. So glad you’re covering this. I apologize if you’ve been asked this a million times, was curious if you’re putting out an EKG bo or other literature.

[@StrongMed]

I'm so sorry, I'm just seeing this comment now! For years I had plans for both EKG and ABG books, and have rough drafts of about 1/3 of each, but never had the time to put either together. By now, most learners seek out educational material on the web/KZbin; thus, the market for new books is much lower.

[@sleepytraveler369]

Dr Strong, would you make a video on Visual snow syndrome? I suffer from this and feel frustrated that it's rarely known..

[@KMx108]

I developed visual snow. It came on when I was 45 and I saw a neuro ophthalmologist who said it meant I was just 'more observant" than other people. That seemed strange to me because I didn't feel suddenly more observant compared to my first 44 years. I was subsequently diagnosed with a functional B12 deficiency, started ultra-high doses of injected methylcobalamin, and the visual snow went away.

[@BoiseLou]

I have ME/CFS and dysautonomia and I get this in addition to other visual symptoms. In my case it is caused by orthostatic intolerance.

[@theboudoirbarber]

Does anyone know what kind of doctors would treat this???

[@StrongMed]

Unfortunately, because the underlying mechanism(s) of ME/CFS isn't well understood, no specific specialty "owns" it. In other words, it falls into the cracks between specialties (e.g. rheum, immunology, neuro), which also means that no one gets specific formal training in it. Also, doctors are poorly reimbursed by insurance for treating ME/CFS, so few actively seek out patients. As a consequence, a minority of those doctors who do identify as an ME/CFS specialist can practice outside the established standard of care because out-of-pocket sham therapies can be lucrative and make up the reimbursement gap. These factors make it collectively difficult for patients to find a good doctor sufficiently knowledgeable and willing to be a solid partner in managing the disease. If you live near a large city in the US or Europe, some major academic centers have ME/CFS clinics (for example, here's ours: med.stanford.edu/chronicfatiguesyndrome.html). But it not, your best bet is to source a few options from an online ME/CFS community in your region, and vet them by your PCP. It's honestly really hard in some places to find someone.

[@thirst4knowledge676]

@StrongMed Thanks for your video! IMHO, “the underlying mechanisms” of ME-CFS have been studied for more than 40 years, with viable research into root causes, yet totally ignored and dismissed by the medical community (especially in the U.S.)! Every single medical journal article I read makes so much sense, yet I have not found a doctor who can even speak at that level! 😮 In fact, my primary care doctor said I’m out of her wheelhouse, but has no recommendations of where to go! At some point the excuses need to stop and the priority of opening treatment facilities needs to happen ASAP! The numbers are only rising with Long COVID, and the lack of educated doctors/ treatment is simply a moral human issue at this point! I’m not sure how the CDC,NIH etc. get away with us this?! Just plain evil! Prayers to ALL! 🙏🏻

[@BoiseLou]

Cardiologists and neurologists who specialise in dysautonomia with an understanding of post-exertional malaise.

[@Crowmother13]

​@@StrongMedlink does not work

[@Truerealism747]

Original name was neurosthenia.but what's diffarance in fybromyalgia or me both cause muscle pain

[@ahmedelmahdi]

Great lecture 🎉 Thank you

[@beth4698]

The symptoms are just beginning to be understood. Meaning a long way to go to find some effective treatments. Mine as well as most of Lyme patients got worse after very long years of antibiotic treatments. Gut is definitely implicated here as 70% of immune system is in the gut. If you can slowly heal your leaky dysbiotic gut maybe it will help to some extent. But hard to recolonized your gut after good bacteria have been killed by antibiotics but some were able to do it depending on your severity.

[@sandyhancock2020]

I have had ME for over 10 years and have developed lesions on my brain

[@winniemaereact1391]

I highly suspect I might have this, but I have POTS… Is it possible for my POTS to be a symptom of ME/CFS?

[@anna-marieeasmus7529]

Do you have post exertion malaise or post exertion symptom exacerbation. This is usually the most common symptoms for mecfs, that most other diseases do not have.

[@prescottperfection6354]

I have both POTS and ME. I had POTS and NCS for several years before also developing ME. Fatigue can be associated with dysautonomia, however, the level of fatigue seen in ME is more severe. Orthostatic intolerance (including POTS, NCS & other forms of dysautonomia) can be a symptom of ME. However, this is only one symptom. Post-exertional malaise (PEM) is the main symptom you need to look out for, as it’s exclusive to ME. If you have PEM then it’s worth looking into a diagnosis. PEM can be difficult to explain to those who are unfamiliar with it. I went on a night out and was bed bound for a whole month after. That’s when I realised something else was going on. Also, the fatigue has to be severe enough to reduce your daily functioning by at least 50% over a period of at least 6 months. Hope that helps!

[@omygod9062]

Van elzakker is very good on this

[@MrFenneauxlefox]

How do you get a diagnosis of this. Every damn symptom for 6 years....

[@StrongMed]

It can be challenging because many doctors are unfamiliar with it, and there is no specific diagnostic test that can be recommended to an unfamiliar doctor. Another big problem is the relatively high number of unscrupulous medical providers who take advantage of the desperation of people with possible ME/CFS by ordering unproven tests or recommending quack therapies which can be expensive and not covered by insurance. In the best case scenario, you're near a large university academic center, as many have clinics or specialists known for their expertise and reliability in ME/CFS. For example, at Stanford, we have a whole group that provides patient care and conduct research: med.stanford.edu/chronicfatiguesyndrome/about.html. Unfortunately, this is not something available in most places. Perhaps your primary care doctor knows of someone local they can refer to? Sometimes online support groups can provide recommendations for specific providers to seek out, but these groups also can contain folks who are well-intentioned but who nevertheless spread myths and contribute to the misinformation about the disease.

[@ophefer1078]

I was diagnosed for ME after a neurospect scan

[@dr.g6105]

Well, that ending was depressing.

[@gwilkins4617]

The truth hurts

[@oneshot35]

Same here - the conclusion, which I already know for years now, still hurts - damn

[@EmperorPenguinXRemas]

Serious question. How do you know it is al real disease, if there are no diagnostic test, etc. And as it is non-specific?

[@StrongMed]

I appreciate your question. This is something that comes up pretty frequently with ME/CFS... - There are many diseases in which the gold standard for diagnosis is clinical criteria and/or clinician gestalt (i.e. there is no one confirmatory diagnostic test). Aside from all of psychiatry falling into this category, so does much of rheumatology (e.g. lupus, Behcet's, scleroderma, Adult-onset Still's disease, etc...), and even some of neurology (e.g. Parkinson's disease) and Ob/Gyn (e.g. preeclampsia, HELLP syndrome). ME/CFS feels different because the clinical criteria is predominantly symptom-based rather than exam or lab-based, but they all share the feature that there is no single test that can tell whether or not a patient has the disease. This is unlike a disease like COPD, in which pulmonary function tests are simultaneously a commonly used diagnostic test and the more-or-less gold-standard. It's also unlike a disease like Cruetzfeld-Jacob disease which is almost always diagnosed via clinical criteria, although a rarely used gold-standard test does exist (e.g. brain biopsy). So in short, having no confirmatory diagnostic test does not argue against ME/CFS being a "real disease" any more than it would argue against schizophrenia or lupus being a "real disease". - While many of the typical features of ME/CFS are non-specific, the post-exertional malaise is an exception. It's probably not pathognomonic to the point of being diagnostic by itself, but I cannot think of an alternative diagnosis which can cause this symptom to the severity that some ME/CFS patients experience. - Lastly, many diseases were initially described based on the observation that certain combinations of symptoms were observed more commonly than would be experienced by chance alone. For example, consider connective tissue diseases (e.g. lupus, rheumatoid arthritis, scleroderma, MCTD). Even before we had an understanding of the immune system and tests for autoantibodies that are used for diagnosis today, physicians identified that this group of patients were similar enough that they appeared to represent a distinct disease (e.g. "rheumatism"). With better scientific understanding over time, this patient group could be subdivided based on both more specific collections of symptoms, as well as based on certain blood tests - thus, clinical criteria for each "disease" (as we currently know them) was developed. But our understanding continues to grow, we may begin to see that the current partitions between different connective tissue diseases are either semi-artificial constructs, or are misplaced. In other words, some percentage of patients with RA may actually be better categorized as having MCTD, or maybe better characterized as having a different, previously unlabeled disease altogether. But despite the uncertainties, lack of diagnostic test, initial lack of known pathogenesis, and occasional reclassification, no one in the last 100 years has seriously suggested that connective tissue diseases don't exist or aren't real. To me, this feels roughly analogous to ME/CFS. Do these patients all have the literal same disease, or with better understanding of the biology, will we realize that there are subtypes of ME/CFS that are distinct enough to be best considered different diseases? Time will tell - but *no one* who has spent significant time studying the phenomenon of ME/CFS has concluded it to be anything other than a "real" medical illness of undetermined pathogenesis.

[@EmperorPenguinXRemas]

@@StrongMed thankyou for the detailed response. You make compelling arguments to consider!

[@mihakavcic7237]

It's the most logical condition out there...

[@ryanneilcarr]

​@@StrongMed I have had epidemic myalgic encephalomyelitis which is an acute vasculitis of brain and spinal cord. Its enteroviral encephalomyelitis. I have no clue what CFS & ME/CFS are. Misdiagnosed people. A patient who has had Enteroviral Encephalomyelitis has Nonparalytic Poliomyelitis. Its a form of Polio. CFS & ME/CFS are symptoms common to many diseases, injuries and equals misdiagnosed person.

[@mbursby]

With all due respect, this type of thinking is why ME/CFS continues to not be taken as serious as it should. The question itself is illogical. If we had never seen a brain, why should we believe an organ exists in our body that allows us to think. What are the odds that millions of people across the globe have the same symptoms yet there is no common cause (disease)? I’m sure there are hundreds of illnesses in which a diagnostic test does not exist, yet that does not negate the disease. The existence of one does not prove the other.

[@Jocelyn_Joestar]

does anyone with this illness have any tips for how to take care of someone with it, my current boyfriend has this disease and i want to find out how to take care of him properly so i know i can be there for him when he needs it. he is 15 and i wonder if anyone knows a way i can be supportive and a good girlfriend! any tips on what to do?

[@BoiseLou]

@StrongMed It would be great if you could cover the controversies surrounding the PACE Trial mentioned briefly in the video. This was a now-debunked yet highly influential study which hypothesed that ME/CFS was caused by an initial insult, such as infection, leading to deconditioning and the development of "false illness beliefs." It included a bespoke form of CBT to challenge these "false beliefs." The form of graded exercise used was upright exercise with no modifications for orthostatic intolerance, let alone post-exertional malaise. kzbin.info/www/bejne/hoOmgmChft2Er7ssi=4KC82Rje6KRHNzxD

[@jokingrudolf76]

"underappreciated disease"--um, we're expected to appreciate disease? I live with ME/CFS and migraine disease and I certainly don'y 'appreciate' these diseases!

[@StrongMed]

Sorry, the original working title for this series was "undertaught diseases", as in diseases which medical school doesn't do a great job of teaching. But a few people I ran it by thought "undertaught diseases" sounded weird, and one questioned whether "undertaught" is even a real word!

[@Truerealism747]

The cioro has caused it that neans all your family is allergic ti the it started my father's also related to adhd autism hypomobility for which i have all mine started adter a fall my father's bafter a virus

[@ryanneilcarr]

They are not the same disease.

[@MP-uo6qd]

How do you know? They have the same symptoms.

[@ryanneilcarr]

@@MP-uo6qd CFS symptoms are common in many illnesses. That's the problem with them.

[@Truerealism747]

@@ryanneilcarr yes it's a nightmare the pain part for me nowadays it's changed over 26 yeaes

[@ixchelkali]

That differs depending on what country you're in. In some countries, they are different diseases. In some countries, "chronic fatigue syndrome" is indistinguishable from chronic fatigue. In other countries, they are two different names for the same disease. In some countries, a patient with the same symptoms as myalgic encephalomyelitis would be diagnosed with chronic fatigue syndrome or with ME/cfs. You and have could have the same disease but would receive a different diagnosis. So sometimes they are different diseases and sometimes they aren't. Of course that creates confusion (as well as confounding research cohorts), which I don't believe was entirely accidental.