Petition: Opposing MEGA

[Keith Geraghty]

Were White's bleatings taken seriously? Did he manage to get you into any trouble?

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.

 

[GeoffSci]

Thanks to the SMC and their relentless campaigning about Harassment. Why don't you suggest a media campaign highlighting all the good biomedical research into ME in order to attract more interest ?
Has that ever been considered ?

Precisely, I can't think why any serious biomedical researcher would want to enter the field given the SMC-promoted harassment meme.

 

[Barry53]

Stephen asked for my advice on what was happening re the Invest in ME position on the OMEGA petition

I suggested that he write to either Jonathan or the Scientific Advisory Board at Invest in ME

Which he did…….

Maybe I misunderstood, or my reply was unintentionally ambiguous, bit it was intended to be be supportive of you.

 

[JoanDublin]

Internet forum discussions that take place, often in considerable detail, and mainly involving people with ME/CFS, about all the current controversies surrounding ME/CFS

Rather like politics and the 'Westminster Village'…….

Sorry, I probably wasn't clear enough. I understood what the phrase meant - I wondered why you used it. Are you implying that people with ME who communicate with each other are living in an echo chamber?

 

[Keith Geraghty]

could I add something, I dont think Charles being involved in the CMRC is a bad thing per se - I would have been more involved with them if they had of asked me to, and I would have attended meetings and so on to see what they were doing - its better to be in the room and have a voice, than outside the room with no voice - whether to stay or leave an organisation is a difficult decision, membership doesnt mean tacit support for a view.

I simply wanted to share the facts of my experience of a junior researcher who sought to join the CMRC - because the idea its a big tent, is fairly disingenuous - critical views/researchers are not well represented, and I agree with Prof Edwards that the CMRC have sought to get the patient community to support MEGA, without details of the study and without any recognition of past trials that pushed the psyco-behavioural model as an effective treatment, and MEGA is being headed by a researcher who believes 2% of kids have CFS and can be cured with CBT-GET, and has tested unscientific mind-control (the Lightening Process) on children with the illness. The patient community should not be asked to support such researchers or research.

I tweeted about trial names and the clear lack of sensetivity among the PACE-cohort and related cabal - eg FINE trial, PACE, SMILE, FITNET - clear lack of understanding of the reality of this illness.

 

[Molly98]

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 the complaints was to tarnish my name, cause distress, encourage 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.

I am so sorry that you had to go through all this Keith, it must have been awful. I really hope that your University is not easily persuaded by them. The whole thing is really appalling.

One day all of this will come out, just like it has with child abuse, institutionalised racism, Hillsborough, one day the truth of all this will come out, and people will all be appalled at how it ever happened and how the hell certain people ended up being given knighthoods and other awards. Lets hope that one day people will be held accountable.

Thank you for being brave enough to still write your papers and do your research in the face of such intimidation, bullying and harassment.

 

[charles shepherd]

SMC references to harassment are stupid and should be dropped but I don't believe that is where the main problem lies

It's late and I don't have the time to start writing a decent summary of all the various factors that all probably interact to some extent that are deterring good quality clinicians from getting involved in patient management (which is a really serious problem here in the UK) and good quality researchers getting involved in biomedical research

I think your suggestion of a media campaign is a good one and it is not something that has been considered

The MRC is going to issue a new ME/CFS highlight notice tp once again try and encourage some applications for research funding from what is the main government pot when it comes to funding medical research here in the UK

 

[BurnA]

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 the 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.

I nominate you for the Maddox prize for standing up for science in the face of harassment.

 

[Marky90]

Sorry, I probably wasn't clear enough. I understood what the phrase meant - I wondered why you used it. Are you implying that people with ME who communicate with each other are living in an echo chamber?

I also found that to be an unfortunate phrase.

Anyways: I literally can`t believe what I`m reading here.. But I`m also like many of you not surprised. JE had a magnificent response, which Holgate probably will print out and throw darts on with his kindergarten-gang.

Keith, thanks for illuminating their shady affairs.

 

[Marky90]

SMC references to harassment are stupid and should be dropped but I don't believe that is where the main problem lies

It's late and I don't have the time to start writing a decent summary of all the various factors that all probably interact to some extent that are deterring good quality clinicians from getting involved in patient management (which is a really serious problem here in the UK) and good quality researchers getting involved in biomedical research

I think your suggestion of a media campaign is a good one and it is not something that has been considered

The MRC is going to issue a new ME/CFS highlight notice tp once again try and encourage some applications for research funding from what is the main government pot when it comes to funding medical research here in the UK

Agreed, it seems they need to be played at their own game.

 

[user9876]

Dear Charles, (@charles shepherd )

I do appreciate your attempt to promote useful dialogue here.

I am not sure that I would agree, however, that the correspondence from Stephen Holgate to myself could reasonably be regarded as 'personal communication'. As Richard Simpson has pointed out, if it was indeed intended to a confidential enquiry between one scientist and another about the motivation for the content of a charity website, directed at an advisor to that charity, I am not sure that there is a legitimate reason for such an enquiry being confidential. It is a matter of wider concern. Moreover, although Dr Holgate did thank me for my reply he provided no response to the issues that I raised. There appeared to be nothing personal about the exchange which was entitled 'Scientific Advisory Board of Invest in ME'.

Concern that I expressed in my comments to Dr Holgate is increased by your note that a recent CMRC meeting discussing MEGA was held at the MRC. If MEGA is a project set up by investigators intending to put in a competitive application for funding then it seems to me a breach of protocol for those investigators to make use of MRC facilities. If MEGA is, on the other hand, a project being commissioned by the MRC or other funding bodies then my understanding is that it is a requirement that such commissioning should be put out to competitive tender, and independently peer reviewed. IiME were not so long ago denied the opportunity to obtain matched funding for a project on the grounds that they did not have a fully transparent competitive tendering system for projects. (As far as I know this has been addressed by IiME since.) I assume that such requirements apply to the MRC or Wellcome.

I am increasingly concerned that MEGA breaches the basic regulations for grant funding in exactly the way that the patient community is concerned about. There may even be legal implications to this. I mentioned to Stephen Holgate that I worried about blurring of distinctions between applicants and funders. I had no response. I am now more concerned.

The enquiry made to me (and I suspect it was only me) by Dr Holgate said nothing about confidentiality and considering the interests of patients expressed here I feel that I am not in a position to keep something confidential when it is has no business to be. I will explore my email records but expect to post the relevant material here in due course.

Given that Holgate is a public employee there is no reason why such communications should be secret. They should be transparent, open, subject to the FoI act enabling the public to keep him accountable for his use of public money.

The whole thing around the MRC and ME seems strange in the way they have tried to encourage certain groups without open invitations or encouragement for wide spread participation. EPSRC (I think but it could be TSB or both) used to run a sandbox process to invite lots of researchers from multiple disciplines to fill important areas. The idea was consortia would then be formed. This seemed to work well within some communities. But the MRC seem to have just been funding one particular group. The MRC's head of governance also appeared at the PACE information tribunal to try and stop information being released.

I did hear that the research councils were being combined into a single organization for all university research which may change the culture a bit.

I do wonder if Holgate wrote to Jo rather then IiME as he didn't want to lower himself and talk to the great unwashed patients. It doesn't say much for the idea of patient participation when they dismiss patient views.

I do however wonder if one of the reasons they don't answer questions is that they haven't thought through a research proposal yet, they just have a collection of people and buzzwords. If they engaged with patients it would help them get to the heart of some of the issues.

 

[snowathlete]

Thanks to the SMC and their relentless campaigning about Harassment. Why don't you suggest a media campaign highlighting all the good biomedical research into ME in order to attract more interest ?
Has that ever been considered ?

Yeah it's hardly surprising is it. Who would apply to do biomed research when you hear all the stories about the aggressive tactics used by the BPS crowd that might hinder your career? And you know that the SMC will not promote your research no matter how good it is. And you look at PACE and no one in the UK is speaking up about how shocking it is. You see the MRC actually defending it in court...this tells you all you need to know about the research environment of ME/CFS in the UK, your chances of getting any research money are F-all. Until that environment changes applications will remain few and far between as with bio researchers into the disease. It's obvious and it's basic stuff this that is easy to resolve if you want to. Of course, this is how the MRC like it.

Until people start to stand up to this stuff it will never change.

 

[Wildcat]

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@charles shepherd wrote: "I think your suggestion of a media campaign is a good one and it is not something that has been considered"
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So the Science Media Centre (as gatekeepers to the media) never thought of engineering a media campaign to encourage good quality researchers to get involved in biomedical ME research, say, as part of the SMC's work with the CMRC?

But the Science Media Centre engineered 'death threats against ME researchers' story is still doing the rounds... as in the Guardian today, as part of the story on this years Maddox Prize winner, Professor Elizabeth Loftus (Maddox prize for brave scientists):


https://www.theguardian.com/science...s-awarded-2016-john-maddox-prize-false-memory

'We can't let the bullies win'

'Sir Colin Blakemore, a neuroscientist and Maddox Prize judge, said Loftus had had an “enormous impact” on cognitive science. “What makes her such a worthy winner of the John Maddox Prize is her determination to use the lessons from her research to challenge courtroom procedures and the unjustified claims of some psychotherapists,” he said.

The prize is awarded jointly by Nature, the Kohn Foundation, and the charity Sense about Science. Previous winners include the psychiatrist Simon Wessely, who faced death threats for his work on chronic fatigue syndrome and mental health, and Edzard Ernst, a scientist and long-standing critic of alternative medicine.'

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[AndyH]

I can assure you that I have been involved in some very robust discussions and disagreements that have take place 'inside the CMRC tent' - which is one of the main reasons why Professor Peter White resigned from the Board…….

Perhaps you could now get him to resign as an adviser to MEGA.

 

[AndyH]

Re Hugh Perry, he advocates strongly for more investment into psychiatric research, so I'd pin no hopes on him for other research funding.

 

[snowathlete]

I imagine those involved in CMRC and Mega will in their minds, and speaking between themselves, and to the media, and funders, adopt the view that the bad response to their study is all due to a minority of nasty patients trying to scupper their honourable efforts. But of course, when you look at it objectively, it's all actions from themselves that have caused this result.

It was them who launched a petition asking patients to endorse their study without much information and with many obvious flaws in what they did reveal, and they handled the whole thing in a very amateur way.

It was them who failed to appropriately respond to concerns for weeks after this, culminating eventually in an opposition petition when it was clear patient concerns were not going to be addressed.

It was them who promoted Crawley's non-story FITNET study as the research we "deserve" and endorsed it despite it's questionable foundations and flawed plans.

It was them who tried to influence a science advisor of IiME and blame IiME for the opposition, rather than taking more reasonable, appropriate steps.

It was them who treated KG badly.

It is them who continue to support PACE even though a student can see it is a terrible study. The data is basic, it is out there in the public domain. There is simply no excuse for anyone pretending otherwise. Its one thing to stick to the line that the treatments from PACE might have merit (even though that is BS to anyone with half a brain) but to ignore the evidence when it is there in black and white just tells us what these people are really all about.

Even if MEGA and the CMRC does limp on, the last couple of months have woken people up to what the CMRC really is and that is a very good thing in my opinion, because to date they got a lot of the benefit of the doubt and that meant they went largely unchallenged. They've had it easy the last few years. That is no longer the case. Opposition will only get stronger against this kind of crap continuing.

 

[JoanDublin]

Even if MEGA and the CMRC does limp on, the last couple of months have woken people up to what the CMRC really is and that is a very good thing in my opinion, because to date they got a lot of the benefit of the doubt and that meant they went largely unchallenged. They've had it easy the last few years. That is no longer the case. Opposition will only get stronger against this kind of crap continuing.

Absolutely agree with this. Personally sick of the disgusting crap I have witnessed. They can shove their crumbs from the table where the sun don't shine. My money is going on IiME and all other ethical researchers like @Keith Geraghty for example. They're heroes in this movie and I know that my sons best chance of a decent life lies with people like them. Huge gratitude to them and to OMEGA for putting themselves in the firing line

 

[user9876]

What sort of character is Stephen Holgate ?

Reading his email to Jonathan Edwards he states:



This implies he recognises that having no association with Peter White is a good thing or at least an appeasing factor.

But we know he stood by, never said anything critical about White, PACE nor BPS in the past. We know he was happy to share Keith's critical emails with White. We know he continues to support Crawley.

I'd like him to explain this. How can he suddenly recognise that having no association with White might be a positive now that he is retired.

It is not that he is supporting Crawley but that he is supporting the very poor science that she is pushing and describing it as good. The FITNET protocol is not fit for purpose and methodologically flawed. He should understand this but he is backing it anyway in the same way as he backed PACE. It could be a club where people are backed without question or it could be that Holgate is not capable of seeing the flaws - either way it is concerning.

Add that to the very strong impression I get that Holgate dislikes patients and the idea of patient participation. It is not good. I think the attitude is that when someone becomes ill some doctors think they loose all ability to think.

 

[user9876]

I'm afraid that you are not going to get the CMRC to produce a unanimous or unambiguous statement on the failings of the PACE trial - so there is no realistic chance of this appearing in the next CMRC Board Minutes!

As I keep saying, the CMRC covers a very wide range of views on both cause and management of ME/CFS

So there are some members of the CMRC Board who believe (like the Lancet and NICE and probably much of the medical establishment that has any interest in ME/CFS) that the PACE trial remains a sound and useful piece of medical research

This is life outside the ME internet village and is another reason why I believe it is essential that the patient voice on issues like the PACE trial have to be heard by the CMRC from 'inside the tent'

It isn't about cause its about recognizing the methodology as poor, Without the basic understanding of the flaws in the trial how can they be expected or trusted to judge anything else.

 

[charles shepherd]

Maybe I misunderstood, or my reply was unintentionally ambiguous, bit it was intended to be be supportive of you.

Sorry, I mary have misunderstood when doing a series of replies in haste!