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We can't know that. As I said in an earlier post, most donating is done privately. I expect there are some who do both. I don't like sick people being criticised for the personal choices they make. It's none of my business what individuals choose to spend their money on.

But how do we know they don't? I don't like to criticise anyone for their choices of how they spend their money. Most donation is done privately. I am reluctant to go down the avenue of guilt tripping individuals into donating to research. People can be informed in a factual way of promising...

I think it may be significant that the emphasis on fatigue for diagnosis, sometimes as in the Oxford definition to the exclusion of all else being required for diagnosis, was a deliberate ploy of psychiatry to 'own' all fatiguing conditions of unknown cause. It allowed them to muddly the waters...

I haven't dived in with my usual half baked rapid response on this thread as I needed time to think about it and I'm not sure I have anything useful to add. I confess I read @Jonathan Edwards introduction and thought simply, well, yes, that's what I thought a syndrome was all along. So have I...

Easy money.

That's an interesting idea, Hutan. If they didn't charge a membership fee, they could recoup a lot of that by not publishing a paper version of their magazine and posting it out to all their members. They could just put it online. And online magazines have the added advantage of not needing to...

I don't fundraise from family and friends because I think it's up to them what they donate to. I feel bad enough even mentioning my own symptoms or difficulties. I don't want to spoil what little contact I have with them by trying to get them to donate. I have also reached the age where most of...

I'm getting increasingly confused by this discussion. I thought PEM by definition referred to the experienced phenomenon of (usually delayed) worsening of symptoms and function following an increase in exertion above our current limit. No theorising, no bringing in other possible preludes to...

As you would expect, those researchers who join us whose papers are heavily criticised react badly. I think anyone whose paper is published can do a google search for the title of their paper and should come across our discussion. They are free to join the forum if they want to. Discussion of...

I see no point in trying to engage with bad researchers and clinicians on social media of the brief and transient variety like Facebook and Twitter. It's too brief and confrontational.

Another important avenue we probably don't use enough is emailing researchers directly, either to point them to the discussion here, or to invite an email dialogue. Even if most falls on deaf ears, a well argued email may make some researchers and clinicians think. Trouble is that's incredibly...

I think a fact sheet about PEM needs a way to capture the full range of people's experiences of PEM in ME/CFS, and not assume one sort of disease always produces worse flare ups than another.

I think they're getting around it by funding BPS studies for MUS, FND, persistent physical symptoms etc, and including ME/CFS. And of course there are multiple studies of exercise and rehab for Long Covid.

I strongly dislike the term flare for PEM/crash. I can't quite explain why. Maybe because to me it implies a particular symptom such as pain increasing for a few days. To me it doesn't carry the implications of being brought to a standstill like crash does. I'm not sure I like either term flare...

Sigh. I'm pleased for Miranda that her health has improved, and that she is able to enjoy walking in nature. I just wish she understood that not all of us can do this, and the harm this will do to many people's health and relationships with those around us, as our well meaning family and...

Thanks, @AliceLily, I think rolling PEM and the blurred line between fatiguability and PEM is important to be included in descriptions of PEM.

I take Charles Shepherd's comment as a genuine expression of appreciation of good things Neil Riley has done in the past. What I find difficult is the assumption that this makes current criticisms unfounded or invalid. It's absolutely possible for someone with good intentions and hard work to...

12) It turns out that there were more than 100 applications to this call and the 4 that received funding had a near perfect score of 14.5 out of 15 points. European ME Coalition (EMEC) @EMEC_advocacy 14) We will express these concerns to the new Commissioner. More than 4 years after the ME/CFS...

Oh dear. Show what a wonderful understanding doctor you are who would never gaslight patients, unlike your ignorant colleagues, then throw us under a bus with GET/CBT. What a disaster. I think I'd rather be gaslighted than pushed into very severe ME/CFS with a nice sympathetic course of GET and...

Well said Peter. I wish Cochrane would be open about their reasons for their about face and republication of the Larun review. Who persuaded them of what, and on what grounds? Did they even read the harms evidence we submitted, or Michiel Tack's detailed critique that they themselves published...