Petition: Opposing MEGA

[Snowdrop]

As trashed as my life has been (courtesy of their malfeasance), I wouldn't want to be in their shoes for all the world. When they fall, it is going to be long and hard, and they will be taking down a whole bunch of others with them.

That would be nice. But it's not what I see happening. Historically they get rewarded, quietly retire and some underling takes all the heat.
Someone will ultimately be sacrificed but not sure who that might be.

 

[batteredoldbook]

And worse. Much worse.
As trashed as my life has been (courtesy of their malfeasance), I wouldn't want to be in their shoes for all the world. When they fall, it is going to be long and hard, and they will be taking down a whole bunch of others with them.

That would be nice. But it's not what I see happening. Historically they get rewarded, quietly retire and some underling takes all the heat.
Someone will ultimately be sacrificed but not sure who that might be.

The trouble here is that PEM really is a thing. We will discover what causes it. It will become clear exercise and activity regimes were indeed causing harm to many thousands of people and risks, and reports of harm were not discussed with new patients, thus denying them their right to give informed consent to treatment. It's a huge problem and one that will destroy the reputations of many physicians both within M.E and within medicine as a whole.
I think some physicians remain driven by an ideological agenda, but others are simply acting to endlessly put off the scandal to another day. Both are making the problem worse. I would help medicine if I could, partly because I think the fight will a waste huge amount of patients' time and bring with it huge suffering, and partly because I think I understand how the problem has come about and can see a way out of it. Sadly medicine does not appear to be interested in accepting my help.

 

[worldbackwards]

As trashed as my life has been (courtesy of their malfeasance), I wouldn't want to be in their shoes for all the world. When they fall, it is going to be long and hard, and they will be taking down a whole bunch of others with them.

Does anyone remember what happened to all the people who said that Autism wasn't "real"? Or that MS was hysterical paralysis? My guess is: probably not very much. If anyone cared, it wouldn't be happening.

 

[batteredoldbook]

"MEGA: I will not support CFS researchers who refuse to discuss CFS research."
[ From my summary of the key MEGA issues (somewhere above) and at https://justpaste.it/10o4c ]

A lot of you saw me try to openly discuss MEGA with medicine this week. It can't, I think, be done. MEGA seems to rely on some questions remaining unanswered.

MEGA fails the acid test for **all** M.E research: The ability to freely discuss The Pace Trial. #pwme

@batteredoldbook

 

[Snowdrop]

It's a huge problem and one that will destroy the reputations of many physicians both within M.E and within medicine as a whole.

Maybe. Time will tell. I presume they aren't worried or they'd be changing their ways.

You certainly have my appreciation for your efforts at trying to get through to them. And don't be discouraged--I've found that it's often true we don't see the effects an action has--at least not right away. People need time to mull something over or to come back to it later when they've dropped thinking on it to get on with other things but then something brings them back to it.

 

[Countrygirl]

http://www.investinme.org/IIME-Newslet-1612-01.shtml

Sigh!


Influences on Research into ME

.........................

On Wednesday 7th December the Forward-ME group will meet with Professor Stephen Holgate of the MRC/CMRC to discuss the MEGA proposal.

In the Forward-ME minutes for 25th October it was already stated that Professor Holgate would be invited to this meeting.

The Forward-ME minutes from October are quite interesting if one also reflects on comments from some CMRC members since that meeting.

But it is even more of a surprise that one trustee of another charity, also a member of the CMRC board and a member of Forward-ME, should have contacted Professor Holgate on 3rd November, after the October Forward-ME meeting, to suggest that Professor Holgate contact Invest in ME’s advisory board regarding the opposing petition – OMEGA.

This Professor Holgate did – and all of this without the knowledge Invest in ME [click here].

This sorry state of affairs seemed to us to be an ugly attempt by the CMRC to influence the charity’s position!

Almost one month on from sending a letter to Professor Holgate to seek clarification about the CMRC (MRC) position on this matter Invest in ME Research has still received no acknowledgment from Professor Holgate – let alone an answer to the questions we asked.

We notified the CEO of the Medical Research Council, Sir John Savill, of the lack of a reply to our questions –




Thank you for confirming receipt of our letter.

You may be interested to know that Professor Stephen Holgate has not even had the courtesy to respond to our recent letter – despite seemingly responding to all others who have contacted him, from what we can discern from the internet.

As Professor Holgate had signed his email to our advisor as “MRC Clinical Professor of Immunopharmacology” then we also assume that he was representing the MRC, as well as the CMRC.

We raised legitimate questions regarding the way that the CMRC, and by association the MRC, conduct their business relating to ME – as well as the distinct conflicts of interest that would seem to exist.

As you will no doubt be aware everyone in the charity are entirely appalled and disgusted with the actions of Professor Holgate – as well as the particular CMRC board member who suggested that our advisors are contacted in this way.


We further stated -


Should we not expect more from the MRC?


It is obvious that we have no faith at all in the CMRC board.

As MP Kelvin Hopkins has asked in a parliamentary question [http://tinyurl.com/h3rnngq]


To ask the Secretary of State for Business, Energy and Industrial Strategy, if he will take steps to identify those responsible for the Medical Research Council's policies towards ME research over the last decade; and if he will seek those people's removal from positions of influence over future of ME research.


As with all the questions posed by Kelvin Hopkins the replies said more about the establishment postition on ME than intended by the scant responses - which were full of obfuscation, apathy and unwillingness to act.

The problems with the policies toward ME research for the last generation, and everything they have led to, is something the charity has been commenting on for some time.

Notably this is maybe epitomised by the events described above involving discussions and emails by CMRC members to contact the charity's advisors without our knowledge.

But looking back over some of our previous newsletters we see that little has changed since Invest in ME became a charity.

In our December 2008 newsletter we wrote of the Medical Research Council when it announced its "new" " "MultiDisciplinary" Panel


If the objective of forming this panel is to encourage new researchers into the field then what has caused this change of policy from the MRC when they have for years rejected high-quality biomedical research proposals and only funded research based on the behavioural view of the illness?

It is difficult to see how this panel could work for the benefit of people with ME and their families when the members of the panel maintain such opposing views of the illness. Maybe members of those charities whom the MRC have chosen to invite to this panel could ask their elected representatives to ensure that correct diagnostic criteria will be used for any future research projects funded by the MRC (i.e. the Canadian Guidelines). Otherwise statements from this panel stating that they are interested in encouraging more research into ME will be based on a charade and will have no real value.




From our January 2009 newsletter - in the section MRC and Biomedical Research on Page 3.

Almost 8 years on and these words from that newsletter seem very prescient – especially the predictions (and when reading this please reflect that this was eight years ago - eight years of people's lives) -


January 2009 newsletter

From our December 2009 newsletter -


Whatever some may think of the MRC's current, protracted policy toward ME (their current effort, which consists of a panel formed by Professor Stephen Holgate, has taken two years to set up its first workshop) the fact remains that the MRC continues to delay what is urgently required - funding of biomedical research into ME.

And

Perhaps one of the last vestiges from the old establishment mismanagement of funding for ME research will be published next year by psychiatrists who were given funding from the MRC for research based on flawed diagnostic criteria.

Margaret Williams writes in her article on the Pace trials (Can the MRC PACE Trial Be Justified?)-


At the MRC Workshop on CFS/ME held on 19th / 20th November 2009 at Heythrop Park, Oxfordshire, in his introduction Professor Stephen Holgate effectively said that the reason for the meeting was the need to move forward,to get away from old models and to use proper science, and that there was no reason not to change things, a view he had also expressed at the RSM meeting "Medicine and me" on 11th July 2009.




The outcome of PACE is predictable (the report will undoubtedly state that CBT is beneficial for people with ME). The fact that proper science, based on biomedical research, has already made the PACE trials redundant and irrelevant is testament to the wasted years of MRC mismanagement.

Unfortunately Professor Holgate has found a strange way to get away from "old models" by including known proponents of the psychosocial view of ME to be present on his panel of experts.


In our 2012 Christmas newsletter we wrote –


In the UK ME patients and their families are now witnessing the real fallout from the discredited PACE Trial - a meaningless and flawed trial, using £5 million of scarce funding.

Questions to Professor Holgate

• We have only seen this one email trail. Are there others that concern Invest in ME Research within the CMRC or MEGA proposal group?
  
• Is this part of a larger campaign, or campaigns, against dissenting voices who oppose MEGA by the CMRC, or by those involved in MEGA, or by another group or organisation of which you are a member?
  
• We note that, in your email to our advisory board member, you purposely included and cc:d several others of the CMRC – including some MRC representatives. Are all members of the CMRC aware of this and in agreement with your action in contacting our advisory board without the knowledge of Invest in ME Research?
  
• Is it the norm for the CMRC to contact the advisors of other charities who oppose CMRC projects, without the knowledge of the charity chair and trustees – and is this a policy of the CMRC which is meant to influence the policies of that charity?
  If this is so then has that policy been authorised with the knowledge and agreement of the full CMRC board and of CMRC members? And if so has it been documented for the public to see?
  
• Have you made contact to all of our advisory board or to others in the ME community or research community, or any others, in any attempt to influence the policies of Invest in ME Research?
  
• Have you also contacted the advisory boards, or equivalent supporting bodies, of other charities who oppose MEGA without the knowledge of the charities themselves?
  
• We note that the most recent organisation to have signed the OMEGA petition which opposes the MEGA project is the Irish ME Trust – an organisation not located in the UK. Have you also contacted their advisory board, or equivalent, to attempt in any way to alter their policy?
  
• As we know that the Science Media Centre sits on the board of the CMRC then is it also with the involvement of the Science Media Centre that you have contacted our advisory board?
  
• With your status as an advisor to Action for ME do you not feel that you have a distinct conflict of interest if one also considers your involvement in CMRC and MEGA and MRC - and that you should not be contacting our advisor in this way as it may make you appear to be less than impartial when attempting to influence research into ME?
  
• Will you and the CMRC provide an assurance that you will not endorse or condone any attempt to subvert the policies of Invest in ME Research by influencing our advisory board and that you will contact the chairman of Invest in ME Research directly if you have any issue with the charity’s position on any subject related to ME?

It would be interesting to receive responses to all of these points so that people with ME and their families and carers may judge themselves what is/has been occurring.

 

[Wildcat]

@Countrygirl ... do you want to post your last post (IME) onto this (Mega) thread too?
http://forums.phoenixrising.me/inde...-study-website-30-november-2016.48118/page-11

.

 

[Countrygirl]

@Countrygirl ... do you want to post your last post (IME) onto this (Mega) thread too?
http://forums.phoenixrising.me/inde...-study-website-30-november-2016.48118/page-11

.

Okay @Wildcat

 

[BurnA]

http://www.investinme.org/IIME-Newslet-1612-01.shtml

Sigh!


Influences on Research into ME

.........................

I think it might be better to abbreviate this so that people visit the website.

Good to share the link though

 

[Countrygirl]

I think it might be better to abbreviate this so that people visit the website.

Good to share the link though

People need to visit the link as only some of the post is copied. It is looooong!

 

[Barry53]

The patient group must not have fixed views

Pity the same cannot be applied to certain researchers. Pots calling kettles black.

 

[Sean]

Does anyone remember what happened to all the people who said that Autism wasn't "real"? Or that MS was hysterical paralysis? My guess is: probably not very much. If anyone cared, it wouldn't be happening.

Hear what you are saying.

But internet.

I am old enough to have well and truly grown up in the pre-internet era. It didn't even exist at all until I was nearly 30, and I didn't have it my home until I was 40.

I can tell you that back in those dark ages finding and sharing important info, organising effective advocacy and crowd funding for good research projects, etc, was far harder.

The critical difference from the autism and MS era stories is that they can't hide this info and associated abuses of power like they used to be able. If you think our situation is bad now, it would have been far worse without the internet to inform ourselves and the rest of the world about the situation. We wouldn't have got anywhere near as far as we have in getting change and holding the guilty to account.

Not a magic solution in itself, but makes it much easier to achieve a solution.

 

[docsimsim]

Ok I'm returning to the subject of MEGA patient advisory group (PAG), and the logistics of those of us with very severe ME trying to participate.

I know many here don't believe that we should engage with MEGA at all, but I'm not entering into that debate here. I've thought long and hard and decided that it's important that those of us with strong reservations about MEGA's design and Prof Crawley'a involvement, should be applying to be on the adult arm of the PAG.

The PAG is being formed whether we like it or not and to disengage at this point is unwise imho.

Now we come to my point. I think those of us with severest ME should have representative/s on the PAG and as so many of us have such limited energy resources, how about job sharing? Pairs of us sharing the job of patient advisor, at least that way have a way of being on the PAG rather than being out because we are too ill to cope with the tight deadline over Xmas/new year. Also personally I can't cope with a 15 way teleconferencing meeting but can cope with written communication.

Ps I find the way that MEGA are rushing the patient selection process absolutely abhorrent btw, but it seems to be none negotiable

 

[trishrhymes]

Ok I'm returning to the subject of MEGA patient advisory group (PAG), and the logistics of those of us with very severe ME trying to participate.

I know many here don't believe that we should engage with MEGA at all, but I'm not entering into that debate here. I've thought long and hard and decided that it's important that those of us with strong reservations about MEGA's design and Prof Crawley'a involvement, should be applying to be on the adult arm of the PAG.

The PAG is being formed whether we like it or not and to disengage at this point is unwise imho.

Now we come to my point. I think those of us with severest ME should have representative/s on the PAG and as so many of us have such limited energy resources, how about job sharing? Pairs of us sharing the job of patient advisor, at least that way have a way of being on the PAG rather than being out because we are too ill to cope with the tight deadline over Xmas/new year. Also personally I can't cope with a 15 way teleconferencing meeting but can cope with written communication.

Ps I find the way that MEGA are rushing the patient selection process absolutely abhorrent btw, but it seems to be none negotiable

Hi @docsimsim. I feel very much the same as you.

I am housebound, not sure if I could keep up with or cope with a many-way video meeting but can write considered responses.

I have applied to join the PAG, though think it highly unlikely I'll be chosen because of my outspoken criticism of MEGA and the CMRC.

I would be interested in supporting anyone else who does get appointed if that would work for them, perhaps by e-mail communication, reading through the documents and helping frame or edit written comments.

I leave that open for now. If anyone in here does get chosen, perhaps they might, if they so choose open up a members only thread to discuss issues, or invite 1 or 2 others to help them with the reading etc. We'll have to wait and see what happens.

I do encourage you to apply. They surely have to be prepared to work with our limitations.

 

[user9876]

Ok I'm returning to the subject of MEGA patient advisory group (PAG), and the logistics of those of us with very severe ME trying to participate.

I know many here don't believe that we should engage with MEGA at all, but I'm not entering into that debate here. I've thought long and hard and decided that it's important that those of us with strong reservations about MEGA's design and Prof Crawley'a involvement, should be applying to be on the adult arm of the PAG.

The PAG is being formed whether we like it or not and to disengage at this point is unwise imho.

Now we come to my point. I think those of us with severest ME should have representative/s on the PAG and as so many of us have such limited energy resources, how about job sharing? Pairs of us sharing the job of patient advisor, at least that way have a way of being on the PAG rather than being out because we are too ill to cope with the tight deadline over Xmas/new year. Also personally I can't cope with a 15 way teleconferencing meeting but can cope with written communication.

Ps I find the way that MEGA are rushing the patient selection process absolutely abhorrent btw, but it seems to be none negotiable

I think there are concerns about how they may run meetings but the PAG can set them right. They talk about a small number of meetings a year with a few adhoc ones but this seems like a bad approach to me. I think regular short meetings rather than a few long ones would be better.

Also it is not clear that they will all be virtual or how they will be run. But again I think when people join the PAG they should be able to dictate this.

I agree with you that it is important that we ensure that people who understand ME, and the research and have the ability to question and challenge are on the committee. (rather than patients who will rubber stamp and be overly impressed by academic credentials - this will only lead to a bad research project)

 

[Snowdrop]

I agree with you that it is important that we ensure that people who understand ME, and the research and have the ability to question and challenge are on the committee. (rather than patients who will rubber stamp and be overly impressed by academic credentials - this will only lead to a bad research project)

Sadly, what they're looking for is exactly patients that will rubber stamp approval on all they do. They may allow a certain amount of illusion of question & challenge but the main and important issues are not to be tampered with. That's not to say there is no value on being on the inside and provided with some information (also expect that they will withhold what they don't want shared). Just my opinion.

 

[docsimsim]

@trishrhymes. I totally agree with you . There is definitely scope for job/responsibility sharing if any of us severe crases apply and get selected.

My ME is more severe than housebound and I intend to make that clear in the 'special needs' section of the application form, so if nothing else they atlseat know that people like me exist and want to be part of the consultation. Maybe I can appoint a proxy to take part in the rushed end of year teleconferencing.

The reason I'm applying is that although several well informed patients (with much better health than me) are applying, there is no way of knowing what the chances of any of us being picked are.

Personally even though I'm applying I'm not sure how I can cope with the immediate tight schedule of end December-4th Jan.

I'm just hoping that yourself or others similar get chosen and then those like myself who're at the severest scale can help/support you.

I think that's the most sensible plan and that's why I'm encouraging those who are highly critical of MEGA to apply to be on the patient advisory group. The more of us apply the more chance we have of striking a balance against those who are just there as 'yes men'. I know a couple of them who are wheeled out by Afme to be on every patient consultation panel going, to the detriment of all sufferers

Hi @docsimsim. I feel very much the same as you.

I am housebound, not sure if I could keep up with or cope with a many-way video meeting but can write considered responses.

I have applied to join the PAG, though think it highly unlikely I'll be chosen because of my outspoken criticism of MEGA and the CMRC.

I would be interested in supporting anyone else who does get appointed if that would work for them, perhaps by e-mail communication, reading through the documents and helping frame or edit written comments.

I leave that open for now. If anyone in here does get chosen, perhaps they might, if they so choose open up a members only thread to discuss issues, or invite 1 or 2 others to help them with the reading etc. We'll have to wait and see what happens.

I do encourage you to apply. They surely have to be prepared to work with our limitations.

 

[docsimsim]

I think there are concerns about how they may run meetings but the PAG can set them right. They talk about a small number of meetings a year with a few adhoc ones but this seems like a bad approach to me. I think regular short meetings rather than a few long ones would be better.

Also it is not clear that they will all be virtual or how they will be run. But again I think when people join the PAG they should be able to dictate this.

I agree with you that it is important that we ensure that people who understand ME, and the research and have the ability to question and challenge are on the committee. (rather than patients who will rubber stamp and be overly impressed by academic credentials - this will only lead to a bad research project)

Well said. That's why I'm asking those who have strong reservations about MEGA (including EC's mere involvement) to apply to at least have a didssenting voice inside MEGA. One can always resign if one feels that the project is beyond rescue and totally ad odds with ME research

 

[docsimsim]

Sadly, what they're looking for is exactly patients that will rubber stamp approval on all they do. They may allow a certain amount of illusion of question & challenge but the main and important issues are not to be tampered with. That's not to say there is no value on being on the inside and provided with some information (also expect that they will withhold what they don't want shared). Just my opinion.

PAG members have to make sure the principles of transparency are adhered to or it becomes a resignation matter, no??

 

[Jan]

Ok I'm returning to the subject of MEGA patient advisory group (PAG), and the logistics of those of us with very severe ME trying to participate.

I know many here don't believe that we should engage with MEGA at all, but I'm not entering into that debate here.

Hi Simin, we may not all agree on whether we should be part of MEGA, but I'm pretty sure you will have the backing of all PR members, you certainly have my full support. Good luck, and I do hope your health isn't affected too badly