Petition: Opposing MEGA

slysaint

slysaint

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Countrygirl said:
Still checking the letter.......it is very looooog, but can't find anything to erase as yet.
There is something I consider of concern. Can you scroll up a few posts and read the post I made regarding EC's statement that the people who attend the clinic have a much rarer form of ME/CFS than those who attend her clinics, please? Her statement makes me uncomfortable. I feel this is significant. What do you think?.....back to the letter........footnotes coming up soon....................ugh! I always find that tedious.
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not sure but I found this line in the report which unexpectedly sort of answers your other question;

" growing awareness and recognition of CFS/ME as a legitimate disease"

I find it confusing for EC of all people to state this.:cautious: Or does this only relate to her definition of CFS/ME?
 
Countrygirl

Countrygirl

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slysaint said:
I find it confusing for EC of all people to state this.:cautious: Or does this only relate to her definition of CFS/ME?
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Me too @slysaint. It is as though she is admitting that she is not studying ME...........as did White, of course.

(Letter is now 8 000 words. (!) if we could be assured we could get our feet under the table and our views respected, we could just outline some concerns and make the letter concise, but I strongly suspect that we will be dismissed as usual, so this will be our one chance to forward our opinions and worries.)

Edited to say my laptop lied concerning the number of words. After some heavy editing it is now approximately 1 800.
 
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Wildcat

Wildcat

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@Countrygirl ... any chance of fitting in to the 're MEGA Letter' that Esther Crawley's 'Fitnet', as widely publicised today, does not study 'well defined ME'.

How can the CMRC and MEGA claim to be studying 'well defined ME' when the MEGA researcher and Vice Chair of the CMRC defines ME as short term tiredness caused by bad sleep and cured by advice on sleep!
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Countrygirl

Countrygirl

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@Wildcat I have had the same thought.

I am also concerned that EC says that her patients' ME is different to the severe forms in the fatigue clinics. Meanwhile, we know the ME represented there is milder than ours in the main. She really doesn't seem to be studying the same disease.

I have worked for a couple of hours on the letter this morning. Hutan worked hard yesterday editing out unnecessary verbiage and now we have a document of about 1 800 words, which is better.

Before we sign off on it, we need to consider including a reference to the latest developments. I note there is also another reference to 'patient harassment' and, if I recall correctly (it was 3 am this morning that I read it) Holgate was condoning this further maligning of the patient population.
 
Wildcat

Wildcat

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@Countrygirl wrote:
"we need to consider including a reference to the latest developments. I note there is also another reference to 'patient harassment' and, if I recall correctly (it was 3 am this morning that I read it) Holgate was condoning this further maligning of the patient population."
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That development (Crawley, fitnet reporting etc) is of vital importance. Its worth holding up the letter to include it.

Its outrageous that Holgate is supporting Crawleys studies on tired children. Her definitions are NOT well defined ME. We should not re-iterate her construction of 'ME' because its not ME. Its tiredness. Holgate has shown his hand yet again.

The "patient harassment" claims have been debunked - Crawley and the SMC re just churning out all the old spin as though PACE had not been exposed as crap. Thanks for persevering with Letter.
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eafw

eafw

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snowathlete said:
Well if today's headlines about Crawley's work, backed up by Holgate as "high quality research" don't leave you wanting to sign the petition to oppose MEGA, I wonder what will.
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A better distinction between the science and the BPS school. An understanding that we will NEVER have a perfect system and have to work with what we have got. A recognition that removing Crawley is the mere tip of an iceberg - she can't stop the science about our illness emerging - but the SMC, the media stooges, charities acting as fronts for BPS, NICE, NHS etc are the ones we really have to go after to shift the culture that impacts on us day to day.
 
eafw

eafw

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charles shepherd said:
out in the real world we have a situation where Professor Stephen Holgate (who is a really decent doc who genuinely wants to help people with ME/CFS)
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Out in the real world we have Professor Holgate turning up to SMC briefings with Esther Crawley and feeding the press a load of propaganda about debunked behavioural studies, conflating fatigue with ME, and yet again trying to undermine legitimate criticism from the patient population with buzz-words and phrases like "hostility" and "rising tensions" and "barriers are being put in the way of trials like this"

Where has that come from, have they been reading these threads ? Is there even any point in writing to Holgate to say that we are in favour of good scienctific research into the condition ( as long as BPS issues are addressed) knowing his stance and allegiences here ?
 
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A

AndyPR

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Guiding the lifeboats to safer waters.
eafw

eafw

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AndyPR said:
Hi, just wondered if you can give your opinion on why it is worth spending all this money on MEGA when apparently all that is needed is CBT according to your future colleague Esther Crawley.
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great comment, can you take screenshots ? I think there's a good chance we are going to see a bit of censorship creeping in, ie comments being deleted if they get too awkward.

ETA, @AndyPR can we use that phrasing or a version of it in the letter/statement to the CMRC that is being put together at the moment ?
 
Wildcat

Wildcat

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Via @Valerie Eliot Smith 's Facebook (written by Valerie Eliot Smith):

https://www.facebook.com/valerie.eliotsmith?pnref=story

"This is the source (unsurprisingly) of this morning's propaganda stunt on the impending FITNET trial for children with "CFS/ME", led by Esther Crawley at the University of Bristol. Clearly, there was a recent briefing which led to this morning's blanket coverage. Esther Crawley and Trudie Chalder appear to be the psychiatric lobby's natural successors to Peter White and Simon Wessely. This is the new generation's way of fighting back against their recent setback with the controversial PACE Trial data release.
If anyone was in any doubt about the safety of the UK's CMRC (CFS/ME Research Collaborative) and their promotion of the prospective MEGA trial, note that Stephen Holgate, chair of the CMRC, spoke at the SMC's briefing on FITNET, alongside Esther Crawley http://www.sciencemediacentre.org/testing-a-controversial-…/
NB. It's important to note that, in the absence of a serious proactive and reactive media strategy which is adopted by the major ME charities and groups, this will continue to happen.

http://www.sciencemediacentre.org/testing-a-controversial-treatment-for-cfsme-in-children/
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