ME/CFS - An Overview of an Underappreciated Disease

A discussion of the symptoms, epidemiology, diagnostic criteria, pathogenesis, treatment, and prognosis of ME/CFS.

#MECFS

[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.

[mrsmacca]

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

[hollyc]

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."

[Tess]

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 .

[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 😔

[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.

[kimcasault]

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

[Zebo]

I'm not sure CBT is the best method of therapy for a lot of people experiencing ME/CFS. It is time and goal 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.

[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.

[michelenichele]

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.🙏

[carolcliff]

Thank you for trying to shed light on this condition.

[imbhm]

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

[riohenry]

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 :((

[wolfpytlak]

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.

[strigiformthunderstorm]

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

[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?!

[websurfer]

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.

[Elysian]

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'.

[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.

[beckyraskin]

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.