ME/CFS - An Overview of an Underappreciated Disease
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- Опубликовано: 1 апр 2023
- A discussion of the symptoms, epidemiology, diagnostic criteria, pathogenesis, treatment, and prognosis of ME/CFS.
For more information, I recommend checking out: me-pedia.org
Because I anticipate it may be the most controversial topic raised in the video, the hypothesis that ME and CFS may be overlapping but distinct conditions is discussed in this paper: www.ncbi.nlm.nih.gov/pmc/arti...
#MECFS
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 RUclipsr 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:
EVERY practitioner we’ve seen, has zero interest in learning about- let alone treating- ME/ CFS.
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."
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.
Well, that ending was depressing.
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 .
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?!
Serious question. How do you know it is al real disease, if there are no diagnostic test, etc. And as it is non-specific?
Chronic and acute pain, weight gain or major loss, all ME people were previously highly motivated. And…and…..and
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.
This is really well done, thsnk you. (From a ME/CFS patient)
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.
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.
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.
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.🙏
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.
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 :((
Your contribution to Medicine and Health sciences is unmatchable! Watched your complete EKG series and other stuff! ❤
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.
Going on 10 years since I got sick and still failing to find doctors who will actually try to treat me.