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@Robert 1973, I am not clear whether they are even trying to group those with post CoVid who end up meeting ME/CFS criteria as a separate group? It could also be read as they are approaching it that all post CoVid is definitely separate to ME? (I know we don’t know yet) Generally, as rvallee...

@Esther12, sorry I am not able to trawl through all the comments, can you tell me which patient group said that so can go direct to their comment? Many thanks.

@Tom Kindlon, sorry I know this was posted over a week ago. One concern I have is there seems to be some post viral syndromes that can last a good while, a year or so, but ultimately are self limiting and need to be differentiated from ME. Such as say what can happen to some people after...

Prof Wessley’s hubris and arrogance knows no bounds. He continues to pull the wool over the eyes of health journalists and others in the medial profession. Only people with ME know what harm he has done and how galling it is to see him comment now on longcovid. With regards to Esther and...

I agree. My concern is a LongCovid UK group, longcovidSOS, have as their strapline, Recognition, Research, Rehab. A few months back I tweeted the spokesperson for the need to be careful of a blanket call for rehab as some longcovid patients seemed to be showing similar PEM to what pwme...

No problem, thanks for replying. I edited my comment above to share I had now seen the link to the Telegraph article was given on this thread earlier and was not behind a paywall so have read it. It would have been interesting to know what others were saying to TG about her comments in the...

@Dx Revision Watch, may I ask what were the evidence and statements in the Telegraph article as I don’t have access to it? Edited to add - sorry @Dx Revision Watch, I have just seen the Telegraph article was linked to on this thread and it was not behind a paywall. Were other professionals...

@Invisible Woman, I agree. The way some people with longCovid are describing how the illness is affecting them they seem to be describing the post exertional symptom exacerbation that happens in ME. If this turns out to be happening to them too then any doctors involved in longcovid need to...

I had not heard of him before. This link says he participates in the Exeter ‘chronic fatigue’ service.https://medicine.exeter.ac.uk/people/profile/index.php?web_id=David_Strain I quickly googled the Exeter CFS clinic, itseems to follow the dreaded bps model following NICE guidelines...

Regarding this quote above by Dr David Strain in the longcovid BBC article mentioned earlier on this thread, does anyone else read that as him portraying CFS as something people usually recover from although they may be prone to get it again? If so, I think that is v inaccurate and another...

Spikedonline is very right wing/Libertarian (receives funds from Koch foundation) outfit and has a firm agenda. They will not want any message that the dangers of CoVid 19 are not only limited to death as they are anti restriction measures.

Thank you @It’s ME Linda. I asked Simon on twitter too which he kindly replied to. He shared too that people with LongCovid have said that many of them now have stopped adding their data daily to the CovidApp. This makes sense so I can see now the 1 in 200 figure is almost certainly inaccurate.

@Simon M, you point out that Tim Spector said his app showed 1 out of 10 people with coronavirus still had symptoms after 3 weeks, but may I ask why you didn’t point out Professor Spector has also shared that only 1 in 200 of sufferers report symptoms to the Covid Tracker app that last for...

Agree. I would be v uncomfortable with WHO engaging with MEAction for the reasons you have given.

Thank you @dxrevisionwatch for that important info and warning to tread carefully.

Thank you @daftasabrush for your comments. I agree the whole notion of rehab in the context of longCovid is problematic as you rightly say it indicates that the issue is temporary when that is not known yet. My concern is that the Longhaul Support Group made up of people with longhaul CoVid have...

Thanks rvallee for your reply. Which teams are you referring to when you say ‘many teams are working with exercise rehab programs’? I am concerned that the longCovid group using the slogan ‘Research, Rehab and Recognition’ don’t realise the danger of what type of rehab they will be given if a...

Ed Y’s article is overall good and his tweets about ME encouraging. However, may I ask if anyone has thoughts on this bit in the article: “The trick, then, is to slowly recondition a patient’s nervous system through careful exercises, without triggering a debilitating crash. On Putrino’s team...

Some good commentary on living with chronic illness and the misogyny in the medical system, but this article glosses over the fact that Jennifer Brea was subsequently diagnosed with CCI and tethered cord.

I haven’t watched it but someone today shared another online teaching module on MUS that took place this month. In the video they apparently cite the 2001 Nimuan, Hotopf, Wessely paper as proof of high rates of MUS with no reference to the 2000 sister paper that showed high rates of MUS...