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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...

Given that forum threads are open to all members, I welcome people from all nations giving their perspective. It can contribute usefully to the discussion. While I applaud the wish to see more donations, I'm not clear what we as forum members can do towards this that isn't better done by the...

I'm not sure what you mean by us focusing on UK based solutions, @Sasha. What are you envisaging?

It looks to me like they are saying they intend to spend the bulk of their reserves on projects with local health boards on developing their ME/CFS services to be NICE compliant. I think they should be open about what they are actually doing. If it means working with BACME, and aiming to get...

I guess it means they know they have made a mess of their governance and Articles, and are putting a positive spin on needing to get an expert in to help sort out the mess.

The term pacing is fraught with unspoken assumptions on both its meaning and therapists unfounded confidence that: a) they know better than patients how they should do it b) it can't cause harm c) baselines exist and can be controlled by the patient d) any program of activity and rest can be...

Thread here: Antihistamines improve cardiovascular manifestations and other symptoms of long-COVID attributed to mast cell activation, 2023, Salvucci et al