Petition: Opposing MEGA

[user9876]

Well, logically, it would suggest that the MEA aren't submitting "good quality research grant applications to the MRC", that is IF they have applied. If they haven't, why not? The same also applies to Invest in ME, if there is money available for biomed research are they not applying for it? If not, why not? If they are, why are they rejected?

I don't think IiME can apply. The research councils fund university research. The people who IiME fund could apply of course.

 

[Daisymay]

Could I just add that I know Keith and supported his CMRC membership application but I had to declare a conflict of interest when this was being discussed because Keith is doing some work for the MEA

But did Peter White and Esther Crawley declare their conflict of interest, that maintaining the BPS model is essential to their careers and grant funding, they need to keep very tight control of the CMRC and not let anyone in who they can't control.

Seems like there is one set of rules in the CMRC for the BPS faction and another for the rest, who are allowed into the gang on sufferance to uphold a pretext of balance and thus give validity to the BPS faction. But do the rest have any real influence? The fact that years down the line the BPS faction is still in total control would say they don't.

It is a complete misnomer to call the CMRC a collaborative, it is a BPS stronghold dressed up as a collaboration for public consumption.

 

[Sean]

thats my story and perception of the CMRC - less collaborative and more cabal.

Rapidly becoming all cult.

Sorry for what happened to you. Appreciate you standing up publicly against this filth.

the CMRC covers a very wide range of views on both cause and management of ME/CFS

Maybe that is the problem.

How much more of the failed psychogenic view do we need? Are the BPS school seriously arguing that they have not had a fair bite of the money and power pie already, after completely dominating the field for three decades, in every possible aspect?

How much failure is enough to trigger the disempowering mechanism?

 

[Sean]

She has learned from PACE and dropped any form of objective test.

Just worth repeating.

 

[batteredoldbook]

Excellent post @batteredoldbook

Cheers Sally. I liked this bit: "I think British medical science needs to immediately and openly make the judgements they are paid to make."

 

[Jo Best]

Well, logically, it would suggest that the MEA aren't submitting "good quality research grant applications to the MRC", that is IF they have applied. If they haven't, why not? The same also applies to Invest in ME, if there is money available for biomed research are they not applying for it? If not, why not? If they are, why are they rejected?

Andy, just to say, it wouldn't be charities applying for MRC funding, it would be the researchers themselves. The MRC has a history of rejecting applications for purely biomedical research (without the psychosocial elements) so biomedical studies have tended to be funded by charities and/or private donors. This is partly why promising small studies are not taken further, because of the amount of funds needed. Crowdfunding to get the Invest in ME Research Centre of Excellence translational biomedical research strategy underway and in progress was intended to break that mould.
Edit - sorry I didn't see @user9876 had also replied - I hadn't refreshed the page.

 

[Daisymay]

the first complaint by White was dismissed - there was another complaint also, I wont say who by but very easy to guess. I believe the aim of both complaints was to tarnish my name, cause distress, enourage me to stop my work in this area and to generate some response from the University that hosts me - this was a clear case of bullying and harassment.

The sustained nature of these vexatious complaints to my host institution has provoked me to put my story in the public domain, sharing it here on PR with the patient community and patient advocates.

Very sorry indeed to read how they have treated you Keith, it's completely unacceptable and unprofessional and reflects very badly indeed on Professor White and colleagues in the CMRC.

Thank you very much for speaking out.

So we've had the BPS gang over the years repeatedly, publicly falsely ( FOI tribunal showed this was false) accuse ME patients of vexatious behaviour and harassment which puts young researchers off coming into the field when all along, in the background, it was they themselves who have been guilty of such behaviour!

Oh what an irony.

 

[AndyPR]

Andy, just to say, it wouldn't be charities applying for MRC funding, it would be the researchers themselves. The MRC has a history of rejecting applications for purely biomedical research (without the psychosocial elements) so biomedical studies have tended to be funded by charities and/or private donors. This is partly why promising small studies are not taken further, because of the amount of funds needed. Crowdfunding to get the Invest in ME Research Centre of Excellence translational biomedical research strategy underway and in progress was intended to break that mould.

Thanks for the explanation.

Which then means that the claim that there is money for biomedical research is false. The evidence is there in that the charities need to fund it, if it was there then the charities wouldn't need to fund it.

 

[BurnA]

But the number of calls and emails that we have had over the past few weeks regarding MEGA has been very small indeed

What concerns our members is practical management, getting a diagnosis, DWP benefit disputes, lack of social support

Charles,

Please try to join the dots.

Problems with Practical management, getting a diagnosis, DWP benefit disputes etc. are all a result of the BPS / SMC doing.

The CMRC, which refuses to acknowledge this and through silence, supports the BPS, is therefore part of the problem.

ME patients need someone brave to speak out. As Jonathan Edwards recently said : the silence is becoming deafening.

You dismissed my request for the CMRC to make a statement on PACE as if it was a crazy idea, yet in the real world, 30 of the world's leading scientist and medical experts on ME have already done this. Sense about Science USA have already done this. Why is it so hard for a collaborative, whose sole purpose is to further the research and understanding of ME, to make such a statement.

It is completely insane for them not to, yet you dismiss this idea without even realising how nonsensical you sound.

Please give this some thought and do not dismiss what you read on PR because you consider PR anti MEGA. A few weeks ago you claimed there was a vocal minority who were against MEGA at all costs, yet the MEGA poll on PR clearly demonstrated otherwise. You have choisen to ignore this and continue to peddle the notion that views on PR may not be representative of the real world.

To suggest PR does not represent your "real" world may be true only because your world is out of step, or uninformed. What about all the ME associations around the world who have choosen to support OMEGA, what world do they represent ?

Thanks.

 

[trishrhymes]

Are you implying that people with ME who communicate with each other are living in an echo chamber?

There is an element of people on ME/CFS internet discussion forums preaching to the converted, especially when it comes to a topic like this where some people have very strong and fixed viewpoints

For example, almost all of the traffic on PR is against the MEGA study and the CMRC

But to what extent this reflects wider public opinion is uncertain

At the MEA we receive a huge amount of feedback from both members and non members on the phone, by email to ME Connect, on social media etc

But the number of calls and emails that we have had over the past few weeks regarding MEGA has been very small indeed

What concerns our members is practical management, getting a diagnosis, DWP benefit disputes, lack of social support

I have written a feature on MEGA for the November issue of our magazine and asked our members to let us know what they think about MEGA - which will obviously help to influence our decision when it comes to deciding whether we are happy to support the protocol that will be used in the research grant application bid for funding

Because at the moment we just don't know what the majority of people feel about MEGA…….

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@charles shepherd wrote:
"There is an element of people on ME/CFS internet discussion forums preaching to the converted, especially when it comes to a topic like this where some people have very strong and fixed viewpoints. For example, almost all of the traffic on PR is against the MEGA study and the CMRC"


That was not always the case, was it. Two or three years ago there was much, much, wider support for the CMRC on PR, support which has drained away.

So what has happened to turn so many people off, people who were previously broadly supportive of the CMRC, who saw it as a source of likely research progress and hope?
.
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The sustained nature of these vexatious complaints to my host institution has provoked me to put my story in the public domain, sharing it here on PR with the patient community and patient advocates.

I may suffer even more negative consequences just for writing an account of my experience over the past two years, but I feel I have no choice but to stand up against bullying and harassment. What is ironic, is that the PACE team claim patients have harassed them, yet their claims were not substantiated in the Information Tribunal.

When I spoke with Tony of the MEA a few weeks back, he said the MEA had had hundreds of calls about MEGA. A time when you took a similar stance about there not being many calls.

We regularly hear the BPS school opine that 'our' threatening and abusive behaviour turns off scientists from coming to ME research (a notion duly quashed by the ICO Tribunal judge). It would seem the people whom the scientific community who wish to engage should be most wary of is the BPS school themselves... and here we have evidence to which we can point (we don't have to make up scurrilous nonsense. )

@charles shepherd, I reiterate that I appreciate all your efforts on our behalf. However, as someone who has had ME for 27 years, been a sporadic member of the MEA, am currently a member, and have dipped in and out of the MEA website over the years and recently started joining in on the MEA facebook page, I had no idea of the controversy about PACE, indeed I tried to follow the guidance of the NICE guidelines to gradually increase my activity to my lasting detriment. If the MEGA petition had been posted a year earlier, I would probably have signed it.

You say: 'What concerns our members is practical management, getting a diagnosis, DWP benefit disputes, lack of social support'. Of course that is true. That was true for me until a year ago, though I would add I also wanted to know about and understand the latest research developments.

It was only after the appalling newspaper headlines (ME patients get better with exercise and therapy) last October (2015) that I started digging deeper. I came by chance across Malcolm Hooper's Magical Medicine on the Invest in ME website and spent last December reading it, shocked to the core that what I had read in 2011 (PACE) and thought was merely rather poor quality research had a much more sinister story behind it. I also read Dr Melvin Ramsay's book and many research papers. As a result I pieced together my own version of the story of ME research and treatment over the last 30 years in the UK and wrote my own blog piece about it which I shared with family and friends.

I only came across Phoenix Rising a few months ago, again by chance when someone mentioned it on a facebook group. I joined 3 months ago. As a result I have felt much more supported, been alerted to and read good and bad research papers and gradually formed an opinion about MEGA which I have been prepared to change in the light of unfolding information. I have not come across dogmatic or closed minds in these discussions, though there has been much forthright and strong opinion expressed.

Why am I rambling on about myself, you may well ask. Because, I think the wider ME community deserves a chance to see both sides of the MEGA story, including the shenanigans of the BPS crowd. I'm sorry my papers are a bit of a mess and I'm not sure whether I've received the November ME Essentials yet. I hope the article about MEGA gives the full picture including all the reasons for the very real disquiet felt about the fact that it is to be overseen (as far as we can work out) by a doctor (Crawley) who has a track record of using inappropriate definitions and treatments of CFS/ME and doesn't seem to understand good science.

To be fair to MEA members, a consultation asking for views is only acceptable if all sides of the story are told. Perhaps Jonathan Edwards could be asked to write a piece spelling out his concerns.

I would go further and say the MEA should not be afraid to advertise Phoenix Rising to members and encourage those who are interested to join so more can educate themselves and interact widely with the world wide ME community. I wish I had found it sooner.

So yes, a year ago I probably would have signed MEGA out of ignorance. A month or so ago I signed OMEGA and the more I learn the more sure I am. Holgate's support of FITNET and the harassment of Keith Geraghty are the final straws. Will MEA members be told about these?

Edit - I see you say you are going to ask members their opinion of MEGA to inform MEA action when the protocol is produced. But how can MEA members form an opinion without that protocol? Surely this is the same mistake whoever put up the MEGA petition made - asking for support of something that is yet to be defined.

 

[nasim marie jafry]

As someone who has suffered from Ramsaydefined ME for 33 years, like all of us, I am desperate for high quality biomedical research and I truly swithered over signing OMEGA.

However, my mind was swiftly made up after Prof Esther Crawley's FITNET media extravaganza a couple of weeks ago. I sadly cannot trust this researcher, who seems uninterested in distinguishing between fatigue and neuroimmune illness - and yet the UK media continues to lap up the conflation and nonsense (just like PACE).

How on earth can it be safe to stop children with ME from sleeping when they need to? This of course has been asked again and again by the excellent charity Tymes Trust charity run by Jane Colby. (Jane and I both got ME post Coxsackie virus in 1980s. We know only too well that true ME is not fatigue.)

I also found Professor Crawley's recent article in the New Scientist to be simply disingenuous. @JohntheJack - another decades long ME sufferer - has written a good response here:

https://johnthejack.com/2016/11/17/a-response-to-esther-crawley/

I myself was only 18 yrs old when I first became ill, I was 19, almost 20, when ME was diagnosed by Prof Behan in late 1983/4. I guarantee that had CBT/GET been suggested it would have been 1)impossible 2)torture.

I think what is most offensive about Esther Crawley and co is the disrespect they seem to have for our knowledge as patients - our lived experience seems to count for nothing. I have seen parents of children on social media speak of how harmed their kids have been by sleep hygiene/GET.

Why are these researchers not alarmed by this?

And they simply seem to think we can dismiss PACE as if it were all a bad dream.

Time they started listening to pwME and respecting us if they want to earn our respect back, which they simply *must* do after the PACE scandal. And it was a scandal, that cannot be glossed away by glib rhetoric, no matter how hard they try.

 

[Cinders66]

For example, almost all of the traffic on PR is against the MEGA study and the CMRC

But to what extent this reflects wider public opinion is uncertain

At the MEA we receive a huge amount of feedback from both members and non members on the phone, by email to ME Connect, on social media etc

But the number of calls and emails that we have had over the past few weeks regarding MEGA has been very small indeed

What concerns our members is practical management, getting a diagnosis, DWP benefit disputes, lack of social support

I have written a feature on MEGA for the November issue of our magazine and asked our members to let us know what they think about MEGA - which will obviously help to influence our decision when it comes to deciding whether we are happy to support the protocol that will be used in the research grant application bid for funding





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So MEA members aren't interested in politics, research, funding etc? They really should be. I fully appreciate the newly ill are probably just hoping pacing and support will help them regain health and not really interested in much else but there's a vast 3 decade accumulated community beyond the newly ill

I think MEA members who aren't following other forums etc are likely to be very led by what the MEA prints in its magazine, and given that I'm sure the magazine for example has praised highly the CMRC conferences over the years, and has probably already celebrated MEGA (it was actually announced at the 2015 CMRC conference) and Holgate for creating it etc then unless they too have been dismayed by the FITNET media and are aware of Esther & Simon & SMC behind that, they probably will be thinking woohoo ME is to get millions spent on serious science, I support that unconditionally.

Anyway I look forward to reading the minutes of the CMRC meeting. I can't I'm afraid buy into the notion that MRC are really "into" funding ME research when they refuse RFAs (and we NEED them) haven't funded our bio bank (patients have), a post mortem facility or anything much since 2012 - and I think I read MRC aren't going to be approached to fund MEGA either. It was sad at the CMRC conference that at the debate on why researchers won't touch CFS/ME none of the key points were raised and therefore nothing much will change.

 

[AndyH]

Well said Nasim!

 

[thegodofpleasure]

To use Prof Holgate's expression, it used to baffle me why the MRC rejected so many researchers bids to investigate biological aspects of ME/cfs and consequently, how their meme, (referencing a lack of quality research proposals), came into existence.

Recent comments, together with certain actions that have now come to light, leave little doubt in my mind now as to who it was that originated and fuelled that meme.

 

[Jan]

Could a FOI uncover how many research applications have been turned down? Does anyone have the energy to do this?

 

[Jo Best]

More news from outside the tent today - Invest in ME Research have arranged for Dr Øystein Fluge from Haukeland University Hospital in Bergen, Norway, to give a public lecture in #Norwich in January 2017. "We hope to see many at this event in Norwich. Welcome". Full announcement here - http://www.investinme.org/ce-news-1611-04.shtml

I started a thread after the update from IiMER yesterday - http://forums.phoenixrising.me/index.php?threads/uk-rituximab-research-update.47932/

 

[TiredSam]

We regularly hear the BPS school opine that 'our' threatening and abusive behaviour turns off scientists from coming to ME research (a notion duly quashed by the ICO Tribunal judge).

Our "threatening and abusive behaviour", ie seeking dialogue and expressing concerns, only arises on those occasions when the BPS crowd are once again positioning themselves to bugger everything up. Unfortunately it has never turned any of them off from continuing to use our illness as their playground.

If legitimate scientists are being turned off from coming into ME research (again, a claim that only ever arises in situations involving the BPS brigade), it now appears that it's the psychoquacks who are vexatiously excluding them with dirty tricks behind the scenes, then spreading the bullshit story that it's because of the patients.

If we look at the legitimate scientists who are involved in ME research, (Ron Davis, the Norwegians, those nice folk at IiME) I don't think I've ever heard any of them complaining about vexatious patients. Where do all the borderline psychopaths disappear to when the biomedical research starts?

Maybe that's the answer - increasing the biomedical research, as well as helping ME sufferers, should also have the side effect of curing the paranoid delusions of certain biopsychosocial proponents as their mythological aggressors simply vanish into thin air, which is where they were plucked from in the first place.

 

[Barry53]

At the MEA we receive a huge amount of feedback from both members and non members on the phone, by email to ME Connect, on social media etc

But the number of calls and emails that we have had over the past few weeks regarding MEGA has been very small indeed

What concerns our members is practical management, getting a diagnosis, DWP benefit disputes, lack of social support

I have written a feature on MEGA for the November issue of our magazine and asked our members to let us know what they think about MEGA - which will obviously help to influence our decision when it comes to deciding whether we are happy to support the protocol that will be used in the research grant application bid for funding

For me therefore, a key issue is that all members are given a truly objective understanding of MEGA; not just its billboard headlines, but the underlying fundamentals as well. I do hope this will be the case.

 

[Ysabelle-S]

The sustained nature of these vexatious complaints to my host institution has provoked me to put my story in the public domain, sharing it here on PR with the patient community and patient advocates.

I may suffer even more negative consequences just for writing an account of my experience over the past two years, but I feel I have no choice but to stand up against bullying and harassment. What is ironic, is that the PACE team claim patients have harassed them, yet their claims were not substantiated in the Information Tribunal.

I am doing fine, I appreciate every comment of support, I dont need or want any accolades, I just think its important the patient community are given accurate information about many things - I am very busy with my work and hope to have some good papers on the way, and a very interesting project starting in 2017 looking at neuro-cognitive function in ME/CFS

Thank you again for speaking out about what's been happening. Re: the first sentence of your last paragraph - I appreciate you're doing this because you believe in good science and decent behaviour, but one of the things that annoys me is the way people like yourself, who are genuinely helping patients, are ignored (by the media and medical establishment) in favour of those who are obstacles and whose theories are unscientific and even harmful. There will come a time when those doing the real heavy lifting, who are currently working out of the spotlight, will hopefully get the thanks and acknowledgement they deserve. The patients really appreciate this work, and it is distressing to see how researchers like yourself are treated. In addition, we need more researchers, and while the behaviour of the usual suspects might put some off, perhaps the sincere appreciation of the patient population might persuade others. I look forward to hearing more in future about your research.

 

[Ysabelle-S]

More news from outside the tent today - Invest in ME Research have arranged for Dr Øystein Fluge from Haukeland University Hospital in Bergen, Norway, to give a public lecture in #Norwich in January 2017. "We hope to see many at this event in Norwich. Welcome". Full announcement here - http://www.investinme.org/ce-news-1611-04.shtml

I started a thread after the update from IiMER yesterday - http://forums.phoenixrising.me/index.php?threads/uk-rituximab-research-update.47932/

Excellent!