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Personally I still think it's off-topic: every member of AfME could be a volunteer and it wouldn't magically validate their approach to PACE. And it is their approach to GET and wider patient advocacy that would direct whether I donated or not, not whether they have paid staff. (I'm not...

Speculative but very interesting (even if it reminds me of the Dynamics & Control module I did years back, *shudder*). I seem to recall another ME/CFS researcher (Klimas?) having a similar proposed mechanism of action and who believed a 'nudge' to the system could lead to a permanent reset. I...

As somebody whose spouse works in the charity sector I'm going to say I hate the 'Aha! You get paid!' gotcha argument applied to charities. Working for a charity is a professional job and the fact that Clare and Sonia may or may not get a paid salary is 100% irrelevant to A4ME's stance on GET...

None taken. I envisaged a statement along the lines you sometimes see with alternative therapy: 'whilst some people report homeopathy made them feel a little better, no study has shown any objective benefit to magic shaken water.' I have no objections to statements written in that way because...

Firstly, thank you for engaging. It is welcome, even if we may disagree about some things. And despite some of the criticism (including from me :)) that you receive I hope you continue to engage in this way. However, the statement above worries me greatly - people with various medical...

There does seem to be increasing evidence that would support two-day CPET as demonstrating a difference in ME/CFS patients to healthy controls. I'm not sure we're quite at the stage of saying it's a useful biomarker - we would need more data to replicate what has been discussed so far, plus...

I think they're arguing that CBT+meds is better than meds. Looking at the results, the study suggests that's the case but the effect is not strong enough to meet the standard p<0.05 cut off: Meds+CBT > CBT (p<0.02) Meds+CBT > Meds (p=0.06, 95% confidence interval does include possibility of...

I'm generally a deep believer in things being cock-up rather than conspiracy*. Despite being more aligned politically to the Grauniad than the Mail, I think the former has been worse on ME because it has a worldview that is more deferential to doctors/scientists/the NHS. Whereas the Mail loves...

Full paper (open access) here: http://stm.sciencemag.org/content/10/434/eaan2306 Journal summary: Write up in New Scientist here: https://www.newscientist.com/article/2165088-autoimmune-disorder-lupus-may-be-triggered-by-bodys-bacteria/

I cannot like that statement highly enough. I see precisely zero shame in mental illness and would be thrilled if there was good, objective evidence demonstrating that 60+% of patients get a lot better with current treatment of choice on the NHS. My objection to PACE has nothing to do with...

Same here: vertigo was the first symptom and very sudden at that. One moment I was fine and then suddenly it was as if the ground beneath my feet had moved. The colleague I was walking down a corridor with at the time noticed it because I had to grab the wall to stop myself falling over. My...

Link doesn't seem to work for me? I get: Comprehensive Nutritional and Dietary Intervention for Autism Spectrum Disorder-A Randomized, Controlled 12-Month Trial.

Well, seeing this on the front page of the BBC when I logged in to my PC this morning was a nice surprise. Congrats all.

I wonder how the Center for Disease Control feel about effectively being described as hiding evidence that CBT/GET works because of 'sustained pressure from activists'? That's a pretty strong charge.

Worth noting they used the 'CBO criteria' which is based on Fukuda 'with the exclusion criteria of Reeves' which does at least seem to rule out some kinds of psychiatric disorder. But (from my read at least) I think you're right in that PEM might not be mandatory. My impression is that the...

It really, really is. I'd like to pretend that means I'll stop using it but sadly I'm like one those cocaine-addicted lab rats, seeking my next dopamine hit.

Absolutely - if you have other medical issues that accompany your ME/CFS then you 100% should get the proper treatment for that. And it is very true that once one has an ME/CFS diagnosis then doctors often lose interest in testing/treating other conditions. My only point was that one needs to...

ETA: however, we should also cut each other some slack. Most of us are trying to achieve the same thing even if we have different ways of going about it. I do think the politics of ME/CFS can be overly fraught at times and people are too quick to criticise others. (Unless, of course, you're...

This is the crux of the issue. Yes, we're desperate for clinical trials because we want a cure as soon as possible - but in reality, we still don't understand the basic pathology of ME/CFS and are in no place to start demanding certain treatments on the NHS. So when patients start going on...

Thanks. I still tend to think of myself as mild because I'm (with adaptions) still in full-time work and I'm sure I read somewhere that 75% of PwME aren't. Indeed, I've always thought that the fact I'm down about 65% in terms of step count (I averaged 8,000 before I got ill) yet would still be...