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You are correct, trying to get the immune modulators and cytotoxic drugs approved by a research ethics board would be next to impossible particularly when the rest of the world including the researchers at large, the peer reviewers only view Me/cfs as a simple fatigue problem with no biomarker...

Arguably a biomarker would make it easier for family doctors to make a diagnosis and for patients to get a clear diagnosis without having to jump so many hoops. Legitimizing the disease in a hostile health care system is important. Thank you for your work. Will take anything by now. It’s been...

The real question is, do people who say they got diagnosed with ME/cfs (could have been decades ago) still meet the 2003 case definition at the one timestamp when they filled out the questionnaires. That was the purpose of this study. The thing is, considering we still don’t have biomarkers nor...

We ME peeps can smell bad studies from far.

That’s totally crazy.

Hutan I very much agree with your post above except the quoted sentences. Of course the definitions of levels of severity are soft, and vary according to clinicians. But if my level of severity for physical dimension was lower, as in able to go out and do things, but more severe for the...

So triggering. Glad I did not watch. In fact I prefer to disappear for the whole awareness month.

Full title: Identification of distinct subgroups of Sjögren's disease by cluster analysis based on clinical and biological manifestations: data from the cross-sectional Paris-Saclay and the prospective ASSESS cohorts Summary Background Sjögren's disease is a heterogenous autoimmune disease...

Yes, yes, yes.

It has been my experience and also general knowledge that family doctors are typically not interested in so called benign viral infections. We know that EBV and some sort of flu-like illness are associated with ME onset. Mine is actually documented by lab but still, nothing to be done.

Instant Pot is good for so many things including cooking rice by itself, rice with meat, soups, stews, hard boiled eggs, etc. I now use it more than the stove top. Rice comes out perfect every time. Easy cleaning.

Eeeeeeeek. What’s next? Coconut water and fairy dust? Edit: Holy water is where it’s at :banghead:

So tired of ‘fighting’.

In my province (unsure about the other ones) we are still at ICD-9 when it comes to coding. We are simply not counted by the health care system, and even less tracked through the years.

Are you kidding me? ….Fear of failing syndrome… Emotional instability in the form of easy crying… wow. A doozie.

What is concerning to me is that they won’t stop at a literature, review. They will then move on to social media and explore activism and perhaps surmise that it hurts patients because it prevents them to ‘get on with the program’ (CBT and GET) and get better. The ‘phenomena’ is so very likely...

Following the new NICE guidelines and following the James Lind Alliance project trying to establish research priorities for ME, I wonder what part of the priorities did the authors felt they felt so compelled to research. From my point of view the authors may read too much of the bad science...

Abstract Introduction: Myalgic encephalomyelitis (ME) is a chronic neurological illness affecting many bodily systems, commonly the nervous and immune systems. Also known as chronic fatigue syndrome (CFS), key symptoms are extreme fatigue, post-exertional malaise, cognitive problems and sleep...

Joint Flexibility and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome After Mononucleosis (co-authors include Drs Lenny Jason and Benjamen Katz) Highlights At least 10% of patients meet criteria for ME/CFS 6 months following IM. Previous reports associated joint hypermobility and ME/CFS...

Knowledge on cause, clinical manifestation and treatment for fibromyalgia among medical doctors: A worldwide survey Abstract Objectives: Hench introduced the fibromyalgia syndrome almost 50 years ago. In the meantime, the prevalence has increased, the clinical criteria have changed and the way...