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I'm pretty sure wessely had 2000 or 2001 report to U.K government on CFS and included that comment in it. If you dig through old Wessely papers I'm sure you can find it. AFAI it was support groups, litigation (i.e. disability), believing your illness is biological and 1 more that worsened outcomes.

@Peter Trewhitt I like it, you touch on a lot of salient points in a professional way. I do think the conflict on interest thing for the editor is actually overally critical. One last thing on the topic is that I like that Tuller has drove home absolute absurdity in the letter. He can't get...

That and also, is it widely used? I'd be surprised if 1% of ME/CFS patients in U.S. had done the LP so I know it's not widely used here. Either way, do we really think the editor who couldn't even correctly identify the condition in his note on the paper (he, again, refers to chronic fatigue...

There are a lot of reasons to not consider this too much - they are spaced over a long period of time and they are to a lot of various parties, rather than one person. It's not like knocking on the same person's door everday. And most importantly, the content is accurate and the arguments are...

I don't personally see the logic in the enterovirus causing M.E., but I am always in support of more testing. But to answer Jen's question, I think biopsing nerve tissue, where presumably the infection must be near or around, seems to be a difficult task. And it must have been near impossible to...

I tried mestinon for a month, working up to 60 or 90 mg every 6 hours I think. I can't remember exactly. I found it worse for my POTS than other drugs - florinef or midodrine - and I experienced no change in PEM or exercise intolerance. It is a mild stimulant but not like "I feel good" kind of...

Sometimes I just say to myself. I'm a hypnotherapist. I've created a cure for ME/CFS, fibromyalgia and many other diseases without any evidence on any aspect of it. But, hey, I just know it will work. One day a pediatric psychologist will perform a study on my treatment. The psychologist's...

Yes, that is one concern I had. There is also the possiblity that they are sparsing out people with ME/CFS due to comorbid conditions or other rigorious criteria. That's fine to be very picky, probably necessary at this point. But I also find it strange, because, there are not too many things...

Thank you to the tweeters and posters reporting on the conference. It would be interesting to know how many people Nath found to not actually have ME/CFS and what diagnosis they were alternatively given. Reading the tweets answered my question from earlier, at the current pace the NIH study is...

Should I be expecting the NIH study to finish after 2021?

As a rule I never criticize someone or something else getting research, progress etc. This is not money taken from M.E./CFS and devoted to buying toupees for middle-aged men. It may be frustrating to see something cosmetic get research, but there is a reason it does and it's because it matters...

I'll add to this discussion the studies of the Lights and Ronald Straud post-exercise genetic expression. Alan Light After a sustained moderate exercise test, CFS patients showed greater increases than control subjects in gene expression for metabolite detecting receptors ASIC3, P2X4, and...

Oh, yeah, this doesn't surprise me at all. Meditation and physical therapy. I fortunately don't have pain as a major symptom and I coun't my lucky stars for it all the time as it means I'm exempted from the pain and painkiller politics. But given my experience in general with fatigue, it's easy...

There seem to be 3 steps in the model, CRF 2 overexpression, 5HT1A autoreceptor desensitization and UNC1 failure. There are 2 drugs that are full agonists, cross the bbb and impact the limbic system, or at least the raphe nucleus. One is the antidepressant Vortioxetine and one is the arousal...

So it seems this is proposed pathology? I may be totally off, but from reading wikipedia this is how some antidepressants work. Except for that second part. One thought is that would a 5-HTA1 agonist specific to the ralphe nucleus be effect - there are 2, but i also read In any case I...

Yeah, I don't know how I misread this proposal so badly and I confused the author with Ben Katz.

Edited out wrong info

Samuel, I have the same spot, on my left. Then it travels from that spot on my left up to through the neck like a wire along the left side of my spine. As a result I'm often pulling hard on that side. Oddly I don't have much pain out wide, but the closer it is to the head, neck and upper...

From the PR thread Denise - I thought so also so I queried Rowe who said they did not norm the SF-36 (to be x/100) so the results were 30 out of 30 and 26 out of 30. They need to make this clearer.

So, he used the Oxford-criteria to find people diagnosed with CFS. That's group 1. What comes next is he decided, let's pretend fatigue doesn't exist as a reportable symptom. What then would people be diagnosed with? It was purely hypothetical exercise and the methods are unclear, afai could...