Article: Fighting over Fatigue (republished: originally published 2015)

Interesting article I had not seen before; features Len Jason, PACE trial, David Tuller, Mary Dimmock, Wessely, White, Esther Crawley, Steven Holgate, Jo Edwards and more.

just pop this bit in here

https://goodmenproject.com/the-good-life/worklife-balance/fighting-over-fatigue/

 

It made my eyes water does this now mean that Crawley is part of the collaboration still and attached to Action for ME with the comment from her friend Hammond on how anxiety about coron19 is going to make more problems with health are we going backwards. Children from Bath are being asked to see a Medic AKA Crawley?

 

It was from 2015, so none of it is present tense.

 

yes I remember that one. I'm pretty sure I talked to her. It was posted on something called Mosaic, which had some complicated relationship to Medium.

 

woo let’s erase the fact he was the appointed chair of the mrc ME expert group since 2007. The CMRC was anything but starting afresh.

silly patients eh, one step Removed from Simon WesselyS patients are fixated on a virus. Actually patients recognise both the complexity and the diversity’s, we are champions remember of complex criteria like ICC which came out before IOM and have various ways of scoring across domains, recognising some might have stronger autonomic dysfunction, others gastric, others immune etc. We are the ones who want a wide Ranging U.K. research program whilst Holgate has focused solely on genetics since 2009. We have been the ones calling for subgrouping of the massive uk CFS umbrella whilst the move of people like wessely, white etc was to lump us all and the MRC funding call studies like the pariante one, used the broad weak oxford criteria

If he means the problem is patients are interested in closely defined ME whilst he’s always been an advocate of broad is best, well thats chiefly imo because his interest is fatigue, whilst we want our specific illness , heterogeneous as it is, studied. I don’t see conflict with what patients want and the IOM criteria which overturned the focus on fatigue.

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It seems Holgate has no interest in being on good terms with patients doesn’t it. Instead of “impartial” above, read establishment man from outside the field with clear lack of “getting” either the patientS suffering of grievances, spinning the rather weak “success” of his project.
So, the threat of him disbanding the collaborative is supposed to have our side quaking ? Is the whole power of the CMRC that it connects the patient groups with the MRC & NIHR? I’ve never really understood why we had to accept doing things that way, rather than a true collaboration of people truly committed to understanding the biology of M.E , such as the weonderful end MECFS advisory committee who would never have put someone like Esther Crawley as Deputy chair.
I cannot understand why Stephen Holgate gets voted in unanimously as chair and is lauded by the charities, AFME used to even have him on their scientific advisory committee, i don’t know if he’s still there as names aren’t listed. The establishment attitude to /terms of working with us suck .

One nice bit of cheer
One influential charity, Invest in ME, balked at the charter, as well as the stipulation that patients can’t be members. “This [charter] is specifically to block patients who might be critical… critical in the same way I would be,” says Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London, who is advising the charity. “As far as I can see,” he says, “the harassment referred to is legitimate criticism of bad science.”

edit it’s laughable that AFME and mea have power or inclination to whip up a media frenzy against establishment researchers. The unhelful media frenzies have been the orchestrated campaigning including by the SMC against patients.

 

One can only hope that Holgate was not fairly reported. If he was, he seems to display the sort of "equipoise" that would be appreciated by those on one side of the debate.

 

These are two other major SH CFS interviews for context
https://www.researchgate.net/public...igue_syndrome_Understanding_a_complex_illness

https://mrc.ukri.org/news/blog/encouraging-new-ideas-for-cfsme-research/?redirected-from-wordpress

 

Panic over sort of . Why does the date come up as 15 April 2020

 

It's ancient history by now.

 

Exactly this. My, undoubtedly unpopular, opinion is that there are a number of issues that PwME continue to agitate about that would be worth dropping as they are some combination of dead ends, ancient history and/or just a huge waste of time and valuable energy.

 

Some of us have memory problems and may have difficulty remembering which historical issues may be discussed, and which not. Is PACE still on the permitted list?

 

this is an unfortunate habit of some sites.

 

Fluff I'm bad so so bad, Crawls away in shame.

But the Article itself does not tell the reader that and that is the worry?

But why republish this now - there is always a game plan.

The term "medical exam" is being used when young people are due for an appointment at CFS clinics and parents are raising concerns. the only reason parents go to clinics is that it is the only way to protect your child in a lot of cases the only good thing is a good letter.

After comments from Dr Phil Hammond about anxiety making Covid 19 a worse epidemic, Mrs Wessely return to health after the Covid 19 and her insistence you should not listen to the guy in the pub but well a expert group formed to gather information (because they have got it so right?), herd immunity, the release of the Oxford Pamphlet and Sharp with another award I'm wondering are the pieces coming together to dismiss the aftermath of viruses?

Apparently the fatigue is "intense" and "very odd" but she will be back to normal tomorrow.

 

Couldn't get to the end I was already spitting out feathers.

I get the feeling there is a reason why they have published now. These things don't just happen with this subject.

 

Pretty ironic, uh? That we kept telling them for decades that when we say fatigue we do not mean the same thing they do, which is basically motivation. I'm sure Gerada will make no connections to that or compartmentalize it somehow as being different. It's only "very odd" if you don't know what it is. Odd as in not the same thing as lack of motivation. So close to getting it right. And to think these people have made their career bullshitting about knowing us better than we know ourselves. Now that she's experiencing it it's "very odd". Bleh.

I'm continuing to read on the COVID19Positive subreddit and the descriptions of both fatigue and PEM are very close to ME. No one used the term obviously but I see so many references to minimal exertion leading to relapses. Lots of dysautonomia, tachycardia and dizziness as well. Who knew reduced blood flow to the brain could be a problem?