Petition: Opposing MEGA

[batteredoldbook]

Does that make MEA a vociferous minority?

The Vociferous era, somewhere between Jurassic and Cretaceous.

 

[Jo Best]

I've seen the point made in the past that AfME CEO salary is generous compared with other (non-ME) charities of a similar size. I think the AfME CEO salary is around £75k, presumably plus employer's pension contributions and expenses in carrying out the work of the charity. I would have thought the role of the charity representative on MEGA is more to do with communications and public relations, as the medical 'expertise' is provided by the NHS clinician/s involved in MEGA.

 

[Dx Revision Watch]

How many members does AYME have?

How many members combined do all the UK ME/CFS patient charities have, excluding AfME and AYME?

Data taken from AYME's Chief Executive Officer’s Annual Review 2014

http://www.ayme.org.uk/documents/10228/11022/Chief Executive Officer Annual Review 2014.pdf/2db66d23-3b2f-49a9-b865-1f71f97ffe65

2014 in numbers (2013 data in brackets):

8,733 (8,369) Total number of members since AYME began 1996
1,495 (3,674) * Members registered online
412 (364) Children & YP Member new registrations
183 (292) Parents and Carers
51 (53) AYME Grads (members over 24 years of age). Paid
8 (8) Full-time CEO; 1 full-time post (RANK Foundation funded);
6 part-time posts (2 funded by Children in Need)

* 2013 figures reflect pre-online registration

--------------

At the time of posting, I can't find a more recent Annual Review for AYME.
I don't have figures for the 25% Group or for Tymes Trust, but neither is a large org.
I will ask AfME, today, for their membership figures for the last three years.

 

[Dx Revision Watch]

membership of AfME is now £21 pa so that would make it around 5,000 members(?)

Difficult to estimate if you don't know how many members are having their sub waived due to hardship but it's known that AfME started haemorrhaging members some years ago.

In 2008, Action for ME were reported in Third Sector as having

"7,673 fee-paying members"

but it was understood at the time of the article that the membership had been dropping for several years.

http://www.thirdsector.co.uk/action-membership-row/governance/article/807171

Action for ME in membership row

07 May 2008 by Paul Jump

 

[JoanDublin]

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?

I know several people have already responded to this but I just want to add my tuppence worth. I'm not a bit surprised that many people keep their details anonymous on online forums. I'm surprised it is a surprise to you though.

In fact I would encourage members to stay as anonymous as possible. Given the fact that the likes of QMUL could pick out and doxx people from this forum and produce 'evidence' of their activities in a court of law is very sinister. Given the powers that the UK Tory Govt have just given themselves in terms of surveillance it is not too far a stretch to believe they would build a case for people being 'able for work' based on their online activity. So I would tell anyone to stay under the radar as much as you can. It could be life or death if your benefits were taken from you

http://www.independent.co.uk/voices...-powers-act-a7426461.html?cmpid=facebook-post

 

[Dx Revision Watch]

I have requested membership figures for AfME for 2013-14; 2014-15 and 2015-16.

 

[Sidereal]

Anonymity is internet forum etiquette. We would never have such an active and honest discussion of private medical matters on a public website such as this if people were posting under their real names and anybody who googles them could see all this private info splattered all over the internet. People who post health related things on Facebook under their real name are taking a huge risk, IMO. Anybody can join a 'private' Facebook group for some illness or other under a fake name pretending to be a patient but in reality they could be working for the government. Social media posts and pictures are used against people's benefits claims all the time.

 

[Valentijn]

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.

"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.

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]

@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.

 

[AndyPR]

2813 supporters

https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

[Sean]

"Post-Exertional Stress"

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).

(* Wessely pulled the same stunt a few years ago in trying to unilaterally alter the UK's edition of the WHO disease classification to place ME and CFS in the mental health categories, and also tried to downplay the importance of it, and dismiss critics as overreacters. If it was such a minor issue, why bother doing it in the first place? He didn't get his way that time. But it is typical of the high handed arrogance this crowd, that they believe that do not need to properly justify their arbitrary and unilateral assertions of power.)

I wonder just how dirty and blatant they are going to get in their daylight hijack of MEGA before they are stopped? Or was this always going to be the outcome, no matter what patients actually want or need?

Is MEGA ultimately going to be nothing more than a gravy train of p-hacking for spurious marginal correlations, using the vaguest patient selection criteria and subjective measures possible to maximise their chances?

Words cannot convey how disgusted and angry I am about this fraudulent re-definitional stunt. If it hasn't revealed their real intentions and lack of basic scientific and moral integrity, then I don't know what will.

Holgate has to make his choice and make it clear: He either has to man up and take these ruthless mongrels on over this bullshit, and win. Or admit he either agrees with it, or is unable to stop them, and then resign.

Calling it "post-exertional stress" is the blatant re-invention

Similar to their long-running project to morph GET into pacing, without the embarrassing admission that patients were right all along.

------------

re: anonymity of patients on forums

We are not in power. By any sane reckoning, we are at the bottom of the power tree, and hence highly vulnerable to malevolent forces far more powerful than us. We have every reason and right to remain anonymous. All that matters in this context is: are our criticisms basically legitimate, relevant, and substantial?

To which the answer is: yes, yes, and yes.

The question we don't know the answer to is: how long will the rest of the world take to wake up to that, and disempower the BPS cult?

 

[Sean]

2813 supporters

How many did the MEGA petition get?

 

[AndyPR]

2813 supporters

How many did the MEGA petition get?

MEGA stands at 2543

 

[charles shepherd]

@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.

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

 

[JoanDublin]

MEGA stands at 2543

This Wednesday 23rd November, OMEGA will have been open the same length of time as MEGA was before they shut it down so by anyone's standards it's already well overtaken it with all things being equal. Would be nice to get a good extra bounce on OMEGA though before close of business this Wednesday

 

[Jo Best]

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.

Absolutely, and they are never going to relinquish their stranglehold, just twist the interpretation of the bio to suit their own agenda, which makes the central message of the Opposing MEGA petition (just say no) so important imo - not that the counter-petition will stop MEGA or the chosen few getting their mega amount of funding, but to raise awareness in the patient community of what's going on and as part of a larger effort to stop the rot of the insidious biopsychosocial movement (in UK it's part of a new initiative called 'Integrated Care', which essentially means 'no healthcare without mental health assessment / intervention').

 

[Daisymay]

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.

 

[Jo Best]

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.

I feel the same about the email exchange involving the Chair (SH) and board member (CS) and another researcher. I'm unclear whether, by the last sentence of his reply below, Charles means that he is contacting his colleagues to see if they are willing to publish the whole email trail to put these comments into context.

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

 

[slysaint]

not sure if this has been posted here; just received the IiME newsletter:
"
A week on from this sorry affair and we have received no reply from Professor Holgate to our letter to him.

Perhaps Sir John Savill, CEO of MRC, may respond in his place - we sent the letter to him also."
http://investinme.org/IIMER-Statement-1611-02.shtml

didn't realise Holgate is an adviser to AfME.........

 

[Chrisb]

Coincidently when @slysaint posted the above I was about to post:

Sadly it begins to appear as though the Constitution of CMRC is similar to that of AFME. People and organisations may sign up and pay their fees and subject themselves to the arbitrary decisions of the inner circle, without even being permitted to know the nature of the organisation.