Petition: Opposing MEGA

[charles shepherd]

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?

 

[Marky90]

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?

Erm

We are patients, not researchers.

 

[Barry53]

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 do not use Facebook. I am just very wary of not knowing who (and in a sense what) is out there, so choose to not disclose my full name, for the moment at least. Maybe Facebook gives an illusion of privacy?

 

[Jo Best]

As this thread seems to have turned into discussions on everythig under the sun...…..

I thought the discussions were on everything under the big tent as the issues around MEGA are wide-ranging and have evolved over decades.

Could I ask a question for a change?

Could I ask a question? Why did you first reply to me that you simply did not have your email to Stephen Holgate to hand and implied it was too late in the evening to find it, then decide you wouldn't post it after all? Was that after some reflection or after some discussion with Stephen Holgate and/or the other researcher you alluded to in your final reply on the subject? Had you said the first time I asked that you weren't willing to share here then I would not have asked twice more (with someone else asking too) leading you to feel you were being pressured.

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?

The two platforms serve a different purpose. Facebook began as a platform to share news and family photos etc, with friends and Facebook suggest use of own names so that friends can find each other on there. Patients of any illness may prefer anonymity and especially the vulnerable such as patients with ME. I certainly had no idea there was any such thing as ME politics when I joined facebook for purely social online contact.

 

[worldbackwards]

Some MEA members may also hold membership of AfME.

I would estimate AfME's membership between 5,000 and 6,500. So we might be looking at a total membership figure of perhaps 10,000 people across the two orgs.

Which would be interesting to compare with the membership of the MS Society* compared to the estimated number of MS patients in the UK.

*35,000 plus members

"Approximately 100,000 people in the UK have multiple sclerosis..." figure from another ME org (MS-UK)

I shall be asking AfME to disclose their last year's membership figure.

Can anyone hazard a guess why so few ME patients join a support group? Is it because we are not encouraged to do so by doctors, or possibly because we somehow feel illegitimate and don't want to band together? You'd think ME patients would need all the support they can get.

I speak as one of the illustrious 4500.

 

[eafw]

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 am somewhat suprised that you would need this spelling out, but here goes:

1) Publicly funded bodies, the government, businesses and institutions have an obligation to give account of themselves, their finances and their corporate structure and workings. Ethics and conflicts of interest are areas that should be included in this. There should be a sense of transparency in the way they conduct their dealings.

2) Genuinely private data should be respected as such. If people wish to disclose correspondence they have received then that is up to them, and it often serves a good purpose to do so. But they should not be forced to (unless under some sort of legitimate court order for example). Along with that is the idea that any organisation, or anyone who has a position of power should respect the privacy of it's members and the public - so for instance NOT trawling the internet for "dirt" that they then use to threaten someone's job.

3) For most people online safety measures include a pseudononymous identity, and for good reason. This is the case in general, and specifically as ME patients. It is one reason many do not like to use facebook, the privacy issue where they require "real" names - and again I would say that people (as individuals rather than representatives of an organisation or government body) get to set their own boundaries here. Some are obviously more concerned about privacy than others. Many I think do not entirely realise the implications of making their personal details so available.

 

[Dx Revision Watch]

I've used my own name on forums, on my own websites and other platforms since I first became involved in advocacy (as a carer of a PWME, not a patient) in 2002. If I had my time again, I would probably not use my own name. I've had creepy stalker type behaviour from someone who had taken the trouble to find out where I live and late one night, some years ago, received a phone call from someone claiming to be "Dr Simon Wessely" although I have never published my phone number.

 

[Esther12]

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've never given my name on an internet forum, so I never really thought about doing so here. Seeing as I've ended up sharing quite a lot of personal medical information over the years, I'm glad I didn't. Also, at first I hadn't realised how badly patients who dared criticise Wessely and co. were being smeared. I can now get nervous on behalf of people who are using their own name, as it seems like there are a lot of influential people happy to misrepresent patient's concerns and motivations. We've seen how QMUL have tried to present perfectly sensible social media comments as evidence of an unreasonable campaign against PACE.

 

[trishrhymes]

I joined Facebook to share news, photos etc with family and friends, so obviously had to use my own name.

I joined PR to share news, views and support with strangers in a public forum. I personally don't mind my name being known. I do understand that others prefer to be anonymous, especially when discussing sensitive issues.

Even on Facebook MEA group people can and do ask for things to be posted anonymously. I think this is perfectly understandable when health issues and problems dealing with government agencies (benefits etc.) are raised.

 

[user9876]

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?

In many cases where transparency is requested it is of people who are in public positions paid for by the tax payer and in positions of power to influence policy. To me their role dictates the need for transparency. We could issue an FoI request to the MRC/Southampton university for such emails. But that is a waste of peoples time. There used to be (and I assume still is) advice on the ICO's website saying opinions given by officials in carrying out their duties are not personal data.

That is very different from people such as myself who are individuals on a forum just making comments.

 

[Graham]

I have a pension, but many of my friends with ME have a real fear of the benefits system. I can't blame them when I look at how much Queen Mary University trawled through my postings and videos in order to produce a 14 page document to refuse a simple request for the 16 data points shown on a small, published graph (the step results). It must have taken someone a good few hours to put all of my stuff together, and many more to compile the document, although I hope that my large number of limerick postings amused them. We know how underhand some folk are at the benefits offices to "prove" that people with ME can hold down a job: fear is the system that they use on us.

So, I decided that I would use my own name, and be willing to be a recognized face (or recognized bald head, if appropriate), simply because I was not vulnerable in that way. I have every sympathy for those who do feel vulnerable.

 

[deboruth]

It isn't a war. The conflict is manufactured to divide and conquer. People have been trying to influence from the inside for many years. It doesn't work. The Wessely School has an agenda and they are sticking to it. There are charities that sit around the table together at the Foward-ME group meetings. If some felt they wished to join CMRC along similar lines of working together under a big tent of fatigue-inducing illnesses and illness philosophies/models then fine, but those that chose to spend their time forging their own path of biomedical research should be respected.

Jo, as a humble colonial, may I respectfully request investigation and disclosure of how the internationally accepted term "post-exertional malaise" or "PEM," generally agreed to refer to PWME characteristic of collapsing, with failure to recover for ages and ages, somehow in the MEGA proposal was metamorphosed to "Post-exertional stress?" This latter would seem to thrust the question of ME back into the swamp of bio-psycho-social purgatory, and is additionally problematic as nowhere in any scientific literature is there any such thing as "Post-exertional stress." Whatever the harms of exertion in respect of ME, nowhere is exertion documented to cause "stress." Au contraire, it is widely conceded that physical exertion in controls and in depressed and anxious groups tends to lead to relaxation rather than stress, while in ME exertion leads to collapse, which state could be described as an extreme form of prolonged over-relaxation, but certainly and by no means any form of stress. Stress is strictly from left field, as we quaint colonials like to say (with our favorite springtime game of baseball in mind.) Well, batter up! Please do now determine the origin and intent of this curious reference to the imaginary entity of "post-exertional stress." Hit it out of the park!

 

[Jan]

'Our CEO Sonya represents the four patient charities involved in the UK CFS/ME Research Collaborative Executive Board on the MEGA team.'

How did this come about?

 

[Countrygirl]

@charles shepherd

To what extent is your influence at the various meetings you attend and maybe even your position on MEGA dictated by the membership numbers of the MEA? Is it AFME's larger membership that enables Sonia to be placed in a position of more influence than Charles, even though he is the one who works so hard in a voluntary capacity and is as far as I am aware the patients' choice?

If the membership received an influx of new people that enabled the MEA to far exceed AFME , would it empower Charles to take the leading role instead of Sonia?

Or are there 'conflicts of interest' involved with a certain member of MEGA that would keep Sonia in the prime position as there clearly is between Holgate and Crawley despite the fact that Charles would be representing the larger charity?

 

[Chrisb]

In the interests of transparency I must declare that my membership of the MEA lapsed at the time of the Civil Wars and Regicide and it was much too late that I learned of the Restoration. So Charles need feel under no obligation to respond to me.

It seems all well and good calling for transparency on the part of patients. Part of the problem is that we are trying to elicit information about an opaque organisation whose one communicative (EDIT potentially central) member clearly feels pressurised not to pass on some information, even if it be of a relatively uncontentious nature. But I am grateful for the time and effort he puts into doing what he feels able to.

My feeling is that CMRC needs CS and the patients he represents much more than they need CMRC in its current form. It is an unfortunate consequence that his negotiating position is best strengthened by the opposition of patients.

The Charter mentioned earlier in this thread and visible on the internet is a curious document. In my ignorance I would have expected that the first matter to be stated would be the legal status of the organisation and the nature of its constitution. I may have missed it, I now miss a lot, but I do not see that.

I would be interested to know what set of rules members of CMRC sign up to. There is in the public domain that fairly anodyne Charter. The MEA is apparently signed up as a charity member of the CMRC. One would reasonably expect all the terms and conditions implied by such membership to be readily available to all members. Yet it is clear that there must be further documents regulating membership. Has anyone found them? I presume that there are here many members of the MEA but there seems little awareness of what it is their association is a member of.

By way of light relief, I must accept that, contrary to my earlier post, whether the illness is called CFS/ME or ME/CFS would have had no effect on the name CMRC. I had for the moment totally forgotten the modern way with acronyms. It would, of course have been the myalgiC encephalomyelitis/chronic fatigue syndroMe Research Collaborative.

 

[Sidereal]

So, Phoenix Rising has more members than MEA and AfME.

 

[TiredSam]

So, Phoenix Rising has more members than MEA and AfME.

Does that make MEA a vociferous minority?

 

[trishrhymes]

So, Phoenix Rising has more members than MEA and AfME.

Anyone know how many British members PR has?

 

[Jo Best]

Jo, as a humble colonial, may I respectfully request investigation and disclosure of how the internationally accepted term "post-exertional malaise" or "PEM," generally agreed to refer to PWME characteristic of collapsing, with failure to recover for ages and ages, somehow in the MEGA proposal was metamorphosed to "Post-exertional stress?" This latter would seem to thrust the question of ME back into the swamp of bio-psycho-social purgatory, and is additionally problematic as nowhere in any scientific literature is there any such thing as "Post-exertional stress." Whatever the harms of exertion in respect of ME, nowhere is exertion documented to cause "stress." Au contraire, it is widely conceded that physical exertion in controls and in depressed and anxious groups tends to lead to relaxation rather than stress, while in ME exertion leads to collapse, which state could be described as an extreme form of prolonged over-relaxation, but certainly and by no means any form of stress. Stress is strictly from left field, as we quaint colonials like to say (with our favorite springtime game of baseball in mind.) Well, batter up! Please do now determine the origin and intent of this curious reference to the imaginary entity of "post-exertional stress." Hit it out of the park!

Hi @deboruth waving to you across the miles As an ever so 'umble ex-pat (I left UK when I got too sick to continue working) and with no connection to the CMRC all I can say is I know, where did 'post-exertional stress' come from, yet it should come as not surprise as it's typical of the twisting of words and phrases of the Wessely school or BPS lobby (edit - and or including CMRC board as we've seen on this thread). 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 playing with words is a main point in the Opposing MEGA petition, which I also feel strongly about as I hate deception, and I believe it is deliberate, having watched how events have unfolded since I became aware in 2010. I just read the Invest in ME Research newsletter where they quote from their website -

The latest extensive and biased media coverage given to the biopsychosocial (BPS) lobby has been prominent, not for providing anything new – it is always all the same. What is new is the way that these protagonists for the BPS lobby, and their supporters, are now beginning to sprinkle their language with 'biological' and 'biomedical' – and attempting to morph into something more acceptable to ME patients who have criticised the dead-end approach of UK research in the last generation.

This REINVENTION doesn’t fool anyone but the most naïve.

 

[Sean]

How many members does AYME have?

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

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I reluctantly have a Facebook account, but locked down to the max, with minimal personal info on it, no interaction or posts of my own, and used only to vote online for ME/CFS charities.