Petition: Opposing MEGA

[worldbackwards]

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.

 

[Dx Revision Watch]

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.........

If this is the case, in which areas is Holgate advising AfME?

 

[Robert 1973]

No - I am not accusing anyone on PR of bad behaviour

But personal attacks can sink to pretty low levels elsewhere on the internet - which is partly why very few docs are willing to interact on social media

I don't want to introduce yet another discussion on this thread but it can be pretty unpleasant for those of us who do have to put up with this nonsense from a very tiny minority from time to time - on one occasion I had to involve the police because falsified documents had been involved and another person (I think) still has a restraining order imposed by the courts

In fact, I was in contact with someone tonight (not a psychiatrist) who just would not do social media for this very reason….

I am very sorry to hear of the abuse you have received, and I agree with those who suggest that it would be helpful if such abuse was documented and made public. There is a suspicion that some (not you) may conflate personal abuse with valid professional criticism, just as ME has been conflated with general fatigue/tiredness.

Having been severely affected for 24 years, I avoided most online discussion of ME/CFS until recently. Whilst I acknowledge that much of the abuse may be censored or sent privately, I must say that I have been very pleasantly surprused to discover how polite and well informed most online discussions and comments seems to be.

It is worth remembering that many of us feel that we are being abused by the UK medical establishment every day. We can't delete it and we can't ignore it because it affects every moment of our lives. If that provokes a tiny minority to respond inappropriately, that is deeply regrettable and must be condemned, but it is not surprising.

It is also worth remembering that ME Research UK has stated that none of the researchers that they have funded have reported any abuse or harassment from any patients.

 

[JohnM]

"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.

I have been preparing my response for feedback to the MEA as per their request in ME Essential, and was wondering where the post-exertional stress reference came from, as it does not appear in their printed copy of the MEGA Q&A page?

In the MEA copy it is referred to (under WILL THERE BE ANY ADDITIONAL TESTS?) as "exercise-induced symptom exacerbation", no better than "post-exertional stress". I have now noticed that there are other anomalies between the MEGA petition web site page and MEA print copy as I work my way through the different documents.

So either the MEA print copy has been edited which I find unlikely, or the MEGA petition web page has been updated (since it was closed?) Assuming the latter, I find it extraordinary that you can set up a petition, gather a list of signatories, and change the content of the original petition?

Does anyone on PR know if it is possible to change the original petition content? If not, I will have a look-see at Change.org support web pages and/or contact their support team to clarify.

 

[Dx Revision Watch]

I have been preparing my response for feedback to the MEA as per their request in ME Essential, and was wondering where the post-exertional stress reference came from, as it does not appear in their printed copy of the MEGA Q&A page?

In the MEA copy it is referred to (under WILL THERE BE ANY ADDITIONAL TESTS?) as "exercise-induced symptom exacerbation", no better than "post-exertional stress". I have now noticed that there are other anomalies between the MEGA petition web site page and MEA print copy as I work my way through the different documents.

So either the MEA print copy has been edited which I find unlikely, or the MEGA petition web page has been updated (since it was closed?) Assuming the latter, I find it extraordinary that you can set up a petition, gather a list of signatories, and change the content of the original petition?

Does anyone on PR know if it is possible to change the original petition content? If not, I will have a look-see at Change.org support web pages and/or contact their support team to clarify.

Might be worth pulling up old cached pages to compare.

 

[JohnM]

Have my answer - How to edit your petition - it would seem that you can edit your original petition content .. appalling for all that implies.

@Dx Revision Watch
Thanks kindly .. will have to give some thought to changing my browser settings and the like for web documents; currently set up to clear all history when I close my browser.

 

[AndyPR]

In the MEA copy it is referred to (under WILL THERE BE ANY ADDITIONAL TESTS?) as "exercise-induced symptom exacerbation", no better than "post-exertional stress". I have now noticed that there are other anomalies between the MEGA petition web site page and MEA print copy as I work my way through the different documents.

https://www.change.org/p/support-th...ation-to-major-uk-research-funders/u/18056402 - this was their first update in response to questions from patients.

Scroll down to this section

Will you be doing additional tests?

We would like to do additional, more time-consuming and expensive tests on a sample of patients that will help us more finely phenotype (describe CFS/ME more carefully) those recruited into the study. We don’t think we will have the money to do this for everybody or for everything. We would like to do additional studies to collect more data on pain, exercise-induced stress and sleep studies and possibly some imaging.

 

[Dx Revision Watch]

Have my answer - How to edit your petition - it would seem that you can edit your original petition content .. appalling for all that implies.

@Dx Revision Watch
Thanks kindly .. will have to give some thought to changing my browser settings and the like for web documents; currently set up to clear all history when I close my browser.

There is a URL path you can use to bring up old cached pages (which I've used in the past but would have to search for again).

I agree that petition texts should not be capable of being edited once they have gone live and started to accrue signatures.

 

[batteredoldbook]

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.

Agree strongly.

 

[batteredoldbook]

Action for ME & PACE
AYME & FITNET
MEGA & ...The ME Association?

PACE, FITNET, MEGA. Such large objects require patient bodies to ease their passage.

 

[lilpink]

Agree strongly.

Me also.

 

[TiredSam]

'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?

 

[Jan]

I don't understand how one person can possibly represent all 4 charities? How?

 

[trishrhymes]

I don't understand how one person can possibly represent all 4 charities? How?

I'd say it's quite common in small organisations to have one person representing several groups with a common interest to make it less unwieldy. Problem here is AFME is not representative of ME groups, being in the pocket of the baddies.

I'm guessing if the MEA was the group representing us, we wouldn't be complaining that we are misrepresented. On the other hand we might be complaining we don't want the MEA tarnished by association with a flawed study. I think it's a classic lose-lose situation.

 

[TiredSam]

Surely one of the advantages of MEA membership was not being represented by Sonya Chowdhury.

 

[trishrhymes]

Action for ME & PACE
AYME & FITNET
MEGA & ...The ME Association?

PACE, FITNET, MEGA. Such large objects require patient bodies to ease their passage.

To be fair, I'd say at the moment it's
AFME and AYME supporting MEGA,
IIME and Tymes against,
and the MEA sitting on the fence awaiting the details and currently consulting members, though not with full enough information in my opinion.

I wrote my comments to the MEA (I'm a member) in an e-mail today. I had a brief reply from Charles Shepherd (amazingly prompt) thanking me and saying they will consult members again when the details of the MEGA bid are available. He also said he's on holiday so I guess he won't be on PR for a while.

 

[trishrhymes]

@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.

Hi Jan, I agree the MEA should be acting strongly in support of @Keith Geraghty. I think @charles shepherd said he would talk to Keith, which seems like a reasonable first step. He would not want to act in a way Keith is not happy with.

Also Charles is on holiday at the moment and taking action might take some time - he will probably want to consult with the MEA committee or whatever it's called so he is acting on behalf of the MEA not just himself (I'm guessing here). He may not be able to tell us more for some time. I'm sure he's aware how we feel about this. He must surely feel the same.

 

[Barry53]

I believe this attempted reinvention is something way beyond being more acceptable to ME sufferers - I doubt they really care about that more than they ever have. I think the BSP crew sense there is a biomedical storm coming, but don't know how to jump ship, so are instead trying to run biomedical colours up the mast of HMS BSP.

 

[Binkie4]

Just feeling very bewildered as a fairly new member.
Am particularly concerned about conversations about the role of MEA, Keith Geraghty's treatment and no way forward appearing since CS is now on holiday/ not available? I acknowledge his usual availability but also notice that issues often remain unresolved and not picked up when he is able to resume.
I am a former member of AfME, diagnosed in 2008, when I had no interest in or knowledge of ME politics until David Tuller. Looking back I was very naive. We encouraged AfME successfully to join the request for release of the Pace data, easier when you are a member and have raised money. I left soon after that when I saw more and we have continued by writing individually to organisations involved.
I stand firmly with those who are concerned about the role of CMRC, the politics of CMRC and what MEGA stands for.

 

[Jan]

I believe this reinvention is something way beyond being more acceptable to ME sufferers - I doubt they really care about that more than they ever have. I think the BSP crew sense there is a biomedical storm coming, but don't know how to jump ship, so are instead trying to run biomedical colours up the mast of HMS BSP.

They don't get to reinvent ME, they were/are wrong, they must admit it.