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It's interesting to add Kristian Sommerfelt's study of twitches/myclonal jerks to David S. Bell's writings on ME/CFS in children. Sommerfelt: Twitches in shoulders or hands Bell: Abdominal pain (more common than adults) Facial flushing "Persistence of reduced activity" or "activity...

As an aside, Komaroff is an editor for UpToDate's CFS content, which still promotes CBT/GET. The content screenshotted below was "last updated: Apr 10, 2018." https://www.uptodate.com/contents/treatment-of-chronic-fatigue-syndrome-systemic-exertion-intolerance-disease

Unfortunately, that is my impression. And this is part of the reason AfME is so sensitive to criticism for past efforts. They meant well, even if it didn't pan out. It's not that AfME is against biomedical research. They just promote all types of "research".

One can only hope this is more than just words. The new CDC training materials that should to be ready this fall will help with this. My experiences interacting with my own health care provider are 1) that they have no interest in/see no need for training their doctors on ME/CFS, and 2) that...

I've been told that AfME's research strategy is "try everything and see what sticks". Because at this point, no one knows what will work. AfME isn't opposed to any specific type of research. If what I was told is true, it could explain some of AfME's research efforts. I also was told AfME is...

Alzheimer's drug development tends to focus on protein aggregates in the brain. And they've all failed. Alzheimer’s disease: why insulin is a new suspect https://theconversation.com/alzheimers-disease-why-insulin-is-a-new-suspect-97222

Unexpectedly, I had an encounter with someone from AfME. I won't say more as I don't want to identify this person. I learned that a goal of the International Alliance for ME is to have the WHO recognize ME as a neglected disease (unsure of wording). Apparently, the WHO picks 7 neglected...

The article quote below seems to say that the study was done only on those who report having "recovered". So, it would be 60% "recovered" by 5 years, 88% by 12 years, and should be 100% by 15 years. Or am I misreading it still? I'm definitely not an expert on this stuff...

Took Jarraw NAC up to 1800mg over a period of about 3 months. Never noticed any effects at all.

One (two?) of the biggest pediatric medical scandals of the 21st century?

Yes, I thought about commenting on that, but the article doesn't technically get it wrong. The 88% recovered by 12 years only refers to patients who already consider themselves recovered, and not ME patients in general. So among young people who consider themselves recovered, 88% did so within...

For many others, it's also a matter of society not investing any money into biomedical research and doctor training that could help with diagnosis. 90% of those with ME/CFS remain undiagnosed in the US,. For example, I could have definitely worked more years (part-time) if I had been able to...

Good article, but has some issues. It's definitely improved/been edited since I first read it a few days ago. First off, the use of the term "Chronic Fatigue Syndrome" and not ME/CFS. The "What Is Chronic Fatigue Syndrome" section doesn't say what CFS is. States the CDC dropped GET "this...

I've only been diagnosed medically with SEID ME/CFS, so I'm not 100% sure about the others. But a patient can be diagnosed with SEID even if they have other fatiguing conditions.

SEID (current clinical diagnostic criteria in US) is not technically a diagnosis of exclusion. This change was made by the IOM to get more patients diagnosed. But no one seems to be studying whether adopting SEID criteria has increased the rate of misdiagnosis. I doubt that's even possible to...

Unger said the updated CDC Information for Healthcare Providers will be available "in June". Previously, we only knew it would be sometime this summer.

If only more US healthcare providers would get the message that their government no longer recommends GET. There is no law that healthcare providers must follow the recommendations of the CDC or AHRQ. State medical boards typically determine these "scope of practice" laws.

Association Between Vitamin D Supplementation, Multiple Sclerosis Relapse Still Unclear https://www.neurologyadvisor.com/cmsc-2018/ms-relapse-linked-to-vitamin-d-supplementation/article/769199/

What can happen is that psychiatry will say "We don't know what you have" and "we can't help you". While medical doctors will attribute any reported symptoms to your being a "psych" patient. Patients can get stuck in medical limbo, where neither doctors nor psychiatrists will try to help them or...

Agreed. I would think “Patients who have learned to listen to their bodies” should be, by definition, already exercising at an appropriate level. There isn’t evidence of patients are deconditioned beyond their physical limitations. “Rehabilitation specialists or exercise physiologists who...