batteredoldbook
Senior Member
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The Vociferous era, somewhere between Jurassic and Cretaceous.Does that make MEA a vociferous minority?
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The Vociferous era, somewhere between Jurassic and Cretaceous.Does that make MEA a vociferous minority?
How many members does AYME have?
How many members combined do all the UK ME/CFS patient charities have, excluding AfME and AYME?
membership of AfME is now £21 pa so that would make it around 5,000 members(?)
As this thread seems to have turned into discussions on everythig under the sun...…..
Could I ask a question for a change?
There are constant calls for transparency, even requests for publication of personal communications and disclosure of the names of people sending offensive emails, yet hardly anyone uses their real name on this forum
I know there are a few exceptions…..
Why is it that so few members are wiling to disclose who they are when over on MEA Facebook almost everyone seems to use their real name?
"Post-Exertional Stress" doesn't even work in the context of a physiological stress. PEM is clearly the reaction to the physiological stress (exertion), so it makes no sense to say that we respond to a physiological stress with another, delayed, physiological stress.I've not looked into it but my guess is they would say that stress can mean physical, in the same way they speak of physical stressors contributing to cause or relapses in ME, but to the average doctor, let alone Joe Public, stress is most often associated with psychological or emotional stressors.
This contemptible piece of Orwellian spin is both an attempt to mislead the rest of the world, and a deliberate provocation to stir up their critics and then dismiss their concerns as an over reaction to a minor issue of nomenclature*, and hence claim it as a reason to (further) stigmatise and ignore those critics, to discredit them so that they don't prevent other 'good normal compliant grateful' patients from accessing 'proper treatment' (CBT & GET, of course)."Post-Exertional Stress"
Similar to their long-running project to morph GET into pacing, without the embarrassing admission that patients were right all along.Calling it "post-exertional stress" is the blatant re-invention
MEGA stands at 25432813 supporters
How many did the MEGA petition get?
@charles shepherd This thread is moving so rapidly, can I just ask for reassurance that the cmrc's treatment of Keith Geraghty will be investigated urgently, it is appalling. There are obviously very shady things happening that Holgate is not sharing with you.
MEGA stands at 2543
Calling it "post-exertional stress" is the blatant re-invention of an objectively measurable reaction to exertion, as a subjective negative feeling about the exertion. It's shockingly inappropriate, though would fit in well with Esther Crawley's habitual omission of PEM when applying the NICE diagnostic criteria in her research.
Jan
I know Keith and I am in fairly regular contact with him
Keith is also doing some work for The MEA in relation to our 'patient evidence' report on CBT, GET and Pacing:
http://www.meassociation.org.uk/how-you-can-help/introduction-to-our-cbt-get-and-pacing-report/
I will also have another word with Keith about his CMRC application
Having spent a considerable amount of time on this forum over the past week or so I am shortly going to take a few days break complete from non MEA social media because I really must catch up on a number of other important duties
CS
As a member of CMRC, MEA should be taking up the issue of Keith's treatment and ensuring that the whole CMRC membership is informed of what is going on in their name.
This is not something that can be sorted out or fobbed of with a little chat to KG, it's a very serious issue which is now out in the public domain. This needs to be officially addressed and steps taken to ensure those responsible are held t account and that this sort of behaviour is not tolerated in the future.
As you can see I'm still dealing with comments and complaints at 11.30pm on a Saturday night and I haven't had time to dig out this email trail today
I'm sorry but I'm not going to be pressurised into publishing on an internet discussion forum what was basically a personal communication that also liked in to comments from another CMRC researcher (not DR C) without their permission to do so
As I've already said, I told Stephen Holgate that members of the Invest in ME scientific advisory board would not approve of aggressive or rude email correspondence being sent to researchers (I know what it's like because I have had some nasty stuff in recent weeks)
And as Jonathan had been making some very helpful, constructive and critical comments about the MEGA study I suggested that he should write to Jonathan - which he did
That's as far as I'm prepaid to go without contacting my colleagues to see if they are willing to publish the whole email trail to put these comments into context