discussion thread

Is this more likely due to an immune system problem? For me there came a point where after many years with very severe ME where resting finally helped to move me down a level. I am now over 25 years into ME and would describe myself as moderate with the very odd severe bout. I have a resting...

When we discuss the problems with trials on cognitive behavioral therapy (CBT) and graded exercise therapy (GET) we usually mention things like lack of blinding + subjective outcomes or the lack of a credible control group etc. These are methodological weaknesses that are generally regarded as...

Hi everyone, I’m keen to know if any forum members have knowledge – or personal experience – of the role of peripheral nervous system tests in ME/CFS diagnosis and in symptom-specific treatments (examples: electromyography and nerve conduction studies; skin biopsy to evaluate epidermal nerve...

There are some issues and concerns around the IDO2 tryptophan trap hypothesis about ME. These are my current thought directions, and should not be considered scientific fact. Please comment, add links, agree or disagree, or move this post to somewhere better if you are a moderator. Concerns...

As the title indicates. Looking for examples of such trials. Systematic reviews (*) of trials that excluded (or downgraded to very low quality) non-blinded trials that used only subjective outcomes as primary endpoints also welcome. Suggestions on amendments to the threads' title or topic...

The possibility of ME/CFS being caused by a chronic viral (or other) infection – for at least some people — has been discussed for a long time. The biggest piece of evidence in favour of t is that infections are very often a trigger for ME/CFS (summary of the evidence here). A similar case has...

Posts moved from NICE ME/CFS guideline - draft published for consultation - 10th November 2020 I agree with this :) I hope dietitians can get to use the knowledge we have about other life-limiting diseases that influence the ability to maintain proper food intake. One of the most used books...

Split from The course of the illness for ME patients in Norway, 2021, Schei and Angelsen The potential effect of sample biases on DecodeME Summary: there is some evidence that this could be a problem, but is not clear how big a problem and it may be possible to adjust for possible biases...

Split from Mail Online: Why many of those struck by Long Covid may be suffering from glandular fever: Blood tests on some patients are coming back positive for ‘ Here is a link from ME-pedia on the use use of valaciclovir. The study that is mentioned on this page showed that, " Improvement...

The idea of GRADE to provide a recipe for making decisions for people who are not themselves capable of making such decisions on their own is a flawed and dangerously counterproductive idea in a medical context. The pseudo-arithmetic structure of allocating evidence to 'grades' has no purpose...

Some people insist ME can only follow from an enterovirus; there are other post viral/infectious sequelae but they are distinctly different and not ME. I don’t recall reading about any studies that showed this but I don’t know or recall every bit of evidence of course.

This thread has been split from a thread discussing a book about Ron Davis: The Puzzle Solver by Tracie White I've been following ME/CFS research and news and reading forums for over 25 years. I think that the UK has played a much bigger part internationally in psychologising the condition and...

=AT25vxMZOC9yc2g7Plhs8S0Nodsy-Nbl5GfAPCIfkD5f_4dp1UvDI1FrEMp0re0Q6-UOr-hZgSynCHGySnIJ1ZILhDkUBnu8tTnApZnMYyfKVA4Kreex68tDR1ntF4S1F2VrfYqXVzNX6jW9SSQrVz_bkds']https://www.dailymail.co.uk/.../Gulf-War-syndrome-not... Gulf War syndrome which left 250,000 veterans suffering long-term fatigue and...

As per title. Following a chat recently with my wife, it was made more obvious to me that (a) my medical record does not list what a crash might be like for me, or the fact that I am housebound, and that I'm housebound in order to be able to function at a level that allows me to achieve certain...

Hey We recently had the study which showed impaired glucose utilization in muscle biopsy samples Anyone know if we have more studies from muscle biopsies? Im thinking about having one myself out of curiosity, and want some references I think history might show that the above mentioned study...

This thread was split from Open Medicine Foundation (OMF) News I thought we could not conclude autoimmunity is likely out of the picture as long as we dont know how to target long lived plasma cells? I mean b-cells dont really matter at that point if im not mistanken, as the autoimmune plasma...

I know much of this is old hat, but just wanted to revisit, with a particular thought in mind. Possibly in the wrong thread, in which case mods please feel free to relocate. As best I understand this, though others here far better qualified: Surely a "controlled" trial is where you control so...

PEM has become a mandatory symptom in many CFS guidelines, so I would expect that there is plenty of data of monitored patients during the malaise/fatigue interval because this is when the disease's mechanism of action is amplified and certain biomarkers should stick out and be clearer. Maybe...

NIH Funding for ME in 2020: Falling Flat http://occupyme.net/2020/11/06/nih-funding-for-me-in-2020-falling-flat/

So there is some evidence for impairment of glycolysis in pwME, leading to use of other fuel sources. I'm curious as to what the practical implications of this impairment on glucose itself (if anybody knows). If glycolysis is impaired, does it meant that glucose is used up at the same rate as...