Petition: Opposing MEGA

[eafw]

I find your comment disrespectful because it attempts to reduce my efforts to mere "baiting". In fact I've put an inordinate amount of effort into determining which questions to put to Professor Ponting. I have discovered his view that Pace is bad science and, I think, I have nailed the issue as to why the MEGA team and the CMRC operate under a "big tent": They have to hide away because they actually disagree on how science is done. I think such disagreement needs to be resolved before the MEGA team can justifiably come to ME patients and ask us for support and assistance.

Really don't know where to start with all that so I'll limit myself to one point: I think it is highly unlikely that they "disagree on how science is done". They may well, in practice, conduct their research according to a varying set of criteria - some of which may align more or less with "the scientific method" , or to some metric as to the value or efficiency of the work - but they would all give you the same stock answer if you asked directly.

I think it's worth recognising that someone like Chris Ponting hasn't done anything shitty by pwME, and that he's in a difficult situation.

Yes, exactly. Trying to get him to disavow Crawley or anyone else for that matter in public like this is really not helpful and is not fair to put him in that position at all.

I think twitter is a pretty rubbish way of communicating with people, so I try to give people extra leeway when judging their tweets.

I'm sure twitter has its place but think it's the wrong tool for the job in this instance, and when used in this way. We have other methods at our disposal so it's certainly not twitter or nothing.

 

[batteredoldbook]

Maybe a less public form of communication would feel less like you were trying to put him in a difficult spot?

I don't know. Also, I don't think that it's wrong to put people in difficult spots when we are campaigning for truth and justice! I just can see how they might resent it, and it could back-fire. I really don't know.

It is tricky. I've had criticism both ways. If I challenge publicly some people are concerned it'll come over too strong, if I challenge privately people apply pressure to me to know was said!

I think MEGA is just awful. I think it is kinda cruel to dangle bio research over patient's heads but pair it with acceptance of researchers who are actively engaged in furthering discredited lines of thought. As such, perhaps I'm not pulling my punches to the degree that I usually do.

Does this mean than I'm liable to get people's backs up? Yeah. Nothing new there. I was forced to choose between doing what's right and what's popular some months ago.

As to Professor Ponting I will judge him by his actions. He engaged yesterday which is cool, but now, hopefully he is aware of the scale of the problem within M.E and MEGA and he has to work out what to do. I maintain my hope that we'll each choose to bring light to this situation, for M.E and pwme haven't fared so well in the dark these past decades.

 

[batteredoldbook]

Really don't know where to start with all that

I'd have started with the bit where I wrote: '"I find your comment disrespectful because it attempts to reduce my efforts to mere "baiting". That way you could have assured me that our convo was founded on respect.

 

[Esther12]

I'm sure twitter has its place but think it's the wrong tool for the job in this instance, and when used in this way. We have other methods at our disposal so it's certainly not twitter or nothing.

Hard to say imo. Some advocates to things that I think are a mistake yet they work out. Sometimes it goes wrong. Very difficult to know how to best make progress.

It is tricky. I've had criticism both ways. If I challenge publicly some people are concerned it'll come over too strong, if I challenge privately people apply pressure to me to know was said!

Yeah, I can see that. With all these new ways of communicating we're probably all unsure about how best to use them.

 

[batteredoldbook]

Yeah, I can see that. With all these new ways of communicating we're probably all unsure about how best to use them.

The big change pwme need is itself composed of lots and lots of little changes. Some of these are changes we can make in ourselves. Other changes require change in other people.
People resist change. They often fight against it. Sometimes they fight fair, other times less so.
Conversations on here provide at least the opportunity for change to happen.

--
M.E: A kick to the joules.

 

[eafw]

I'd have started with the bit where I wrote: '"I find your comment disrespectful because it attempts to reduce my efforts to mere "baiting". That way you could have assured me that our convo was founded on respect.

You would, yes, as it's fairly clear that you think that respect is something that can be demanded of others. I fundamentally disagree with that, and chose not to address the point in my first reply as it didn't seem as if it would be fruitful to go on that particular tangent.

 

[batteredoldbook]

You would, yes, as it's fairly clear that you think that respect is something that can be demanded of others. I fundamentally disagree with that, and chose not to address the point in my first reply as it didn't seem as if it would be fruitful to go on that particular tangent.

You turn your disrespect of my efforts today ("baiting") into the appearance of an unreasonable demand for respect on my part. Chapeau.

 

[Jo Best]

A comment on today's post.. https://opposingmega.wordpress.com/2016/12/02/mega-shambles/#comments

Peter T
December 2, 2016 at 7:32 pm
I am trying to retain an open mind about the MEGA project and when their website came on line thought, given the obvious concern about Prof Esther Crawley’s participation in this study, to ask about the research interests of the other members of the team.

Given that their first concrete action announced is the establishment of a patient advisory group that it made sense starting with Prof Paul Little, who is the team member participating in selecting the panel members (Note. Presumably if they are sending draft proposals to the advisory panel members during the week beginning the 19th of December for submission to a funding body in early January they have already or are currently drafting those proposals.)

There is a CV with a full list of publications on the University of Southampton website, see

Prof Paul Little, University of Southampton
http://www.southampton.ac.uk/medicine/about/staff/psl3.page#publications

Obviously it will take time to go through his impressive list of publications, but he has an original back ground in General Practice, with extensive and varied research interests though perhaps a theme of models of service delivery runs through much of it. However what for an ME patient does set a flag waving was his interest in use of CBT in treating Irritable Bowel Syndrome in the context of a psycho-social disease model. (Note. The content of the CBT also includes an emphasis on the value of exercise.)

Title of the ongoing research protocol:
“Assessing Cognitive Behavioural Therapy in Irritable Bowel (ACTIB): protocol for a randomised controlled trial of clinical-effectiveness and cost-effectiveness of therapist delivered cognitive behavioural therapy and web-based self-management in irritable bowel syndrome in adults”

A quote from the section on the content of the planned CBT content:
See http://eprints.soton.ac.uk/379324/1/e008622.full.pdf
“The CBT content of the two treatments is the same and is based on an empirical cognitive behavioural model of IBS.16 The model specifies that factors such as stress and/or gastric infection trigger the symptoms of IBS, which are then maintained by patients’ cognitive, behavioural and emotional responses to the symptoms ”

Obviously I would welcome comments from other readers of this Blog on their thoughts on this particular research protocol.

 

[BurnA]

As to Professor Ponting I will judge him by his actions. He engaged yesterday which is cool, but now, hopefully he is aware of the scale of the problem within M.E and MEGA and he has to work out what to do.

I read your twitter exchange and I consider it productive. Thanks.

 

[batteredoldbook]

I read your twitter exchange and I consider it productive. Thanks.

Hey thanks for saying it.

 

[Barry53]

Within context I think it is strong for Professor Ponting to say that Pace is bad science, but actions are what counts. He shouldn't be working with those who act as if Pace were good science.

Indeed. Actions speak louder than words. Tacit support only reinforces these folks "false science beliefs".

 

[Sean]

“The CBT content of the two treatments is the same and is based on an empirical cognitive behavioural model of IBS.16 The model specifies that factors such as stress and/or gastric infection trigger the symptoms of IBS, which are then maintained by patients’ cognitive, behavioural and emotional responses to the symptoms ”

Note how they always talk about a 'model'. It is a way of avoiding responsibility. When called out they can say that they always acknowledged it was a model, not a proven theory.

Yet they act as if it is proven and there is no (critical) questions about it left to answer.

 

[Sean]

Profs Holgate, Ponting, et al, are experienced senior clinicians and researchers, with considerable worldly experience of human politics and its pitfalls, and hence have no excuse for not doing their due diligence on both the technical and political aspects.

People in that position, especially in the UK, cannot say they did not know this was a very difficult, problematic, and fractured area of medicine, with no easy answers lying around.

They are going to have to face the fact that the real problem here is the intransigence and corruption of the BPS school, who, despite certain recent platitudes to the contrary, are never going to concede their basic causal and therapeutic claim nor admit serious error, and so will have to be forced aside if there is to be any real progress.

 

[batteredoldbook]

Profs Holgate, Ponting, et al, are experienced senior clinicians and researchers, with considerable worldly experience of human politics and its pitfalls, and hence have no excuse for not doing their due diligence on both the technical and political aspects.

The problem with "CFS", as I think Prof. Holgate originally acknowledged, is that it was a bit of a mixed bag (a heterogeneous population). In fact within "CFS", the Post Exertional Malaise of M.E was confused with it's exact opposite, the Pre-Exertional Malaise of psychological fatigue (or "deconditioning"). Whatever its intention, this conflicted and paradoxical super set "CFS" stymied biological research, re-enforced prejudice, and muddied discussions of the issue for a period of decades.

The conflation of ME and psychological fatigue wasn't really founded on biomedical evidence. It was primarily a simple choice made by physicians. It is therefore grossly unfair for medicine to now demand that it's own wrong-headed choice requires biomedical evidence to be undone. It does not. The bias should never have been introduced in the first instance and can be wiped away with the stroke of a pen. Patients consistently report harm from current treatment and NICE guidelines need to be updated *immediately*.

I think Professor Holgate should have addressed the contradiction within the definition of "CFS" at the very start of the UK "CFS/ME" Research Collaborative (CMRC). The main work of that body should have been to find resolution to this thoroughly divisive issue. But instead, years down the line, the ongoing conflict between diametrically opposing theories of behavioural and biomedical maintenance in CFS have simply been thrown back to patients as the "MEGA" study. But the latter is a diversion. We do not need to wait years for a new study to tell us that "CFS" is an unhelpful concept and one left unsupported by the intellectual collapse of the Pace trial.

I suggest the MEGA team have lost their way. They cannot even agree on how good science is done. Professor Pointing says Pace is bad science while Professor Crawley says it's "well conducted". Professor Holgate supports the behavioral research of FITNET-NHS as "high-quality" and is joined in this by AYME, while Dr Shepherd positions the ME Association directly against CBT/GET. As to Action for ME and MERUK, I don't believe they want any serious discussion of the division at the heart of UK "CFS" at all.

MEGA is a relay team consisting of members who run in opposite directions. That's not a winning team.

However, within this mess, there is one final insult to People with ME. It is, apparently, now our job, the patients' job, to resolve the differences within the MEGA team and within the definition of "CFS" itself. And, get this, 15 of us have been given a few weeks over the Christmas period to do it. Lol.

Well, no. We should refuse. It was Professor Holgate and the CFS/ME Research Collaborative's role to address the dire state of British medical research into M.E and they have not yet done their job.

@batteredoldbook
11:36 03/12/2016

 

[slysaint]

They should all watch these two presentations (as featured on another thread):

The Swedish ME Association RME (Riksföreningen för ME-patienter) has now released videos of lectures from their ME-conference in Stockholm in October.

Two of the lectures were in English:
Summary of the IOM Report and the Relationship to Diagnosis and Treatment of ME/CFS
Lucinda Bateman, MD, Bateman Horne Center, Salt Lake City, USA

The RituxME and CycloME studies – Ongoing Clinical Research in the ME/CFS Research Group
Øystein Fluge, MD, Dep. Oncology and Medical Physics, Haukeland University Hospital, Bergen, Norge

hopefully they might learn something.

 

[Keela Too]

MEGA is a relay team consisting of members who run in opposite directions. That's not a winning team.

Worse still, those who run against straight science get to control who carries the baton.

 

[batteredoldbook]

Worse still, those who run against straight science get to control who carries the baton.

Sally, they control the equipment, the track, the money and the media glare, and they stumble and delay and show us poorly forged sick notes "from their mums", but in reality: People with M.E hold the baton of science and one by one and inch by inch we will win the race.

 

[Jonathan Edwards]

Hey thanks for saying it.

I also think the exchange was productive. For Chris Ponting to express a frank view on PACE is important. It would be have been nice if Stephen Holgate had taken the opportunity to do the same in response to my email. Ponting may not want to say more but I suspect he will not be threatened. He seems to have a wide angled view. I personally find twitter absurd but if people know when not to overdo it I grant that it may be a powerful method of communication.

 

[docsimsim]

I read your twitter exchange and I consider it productive. Thanks.

I've asked Prof Ponting on Twitter why the children's arm of MEGA is having pre existing patient advisory groups from FITNET parachuted in? Sincerely hope he will respond to it, though not holding my breath

 

[Barry53]

I'd have started with the bit where I wrote: '"I find your comment disrespectful because it attempts to reduce my efforts to mere "baiting". That way you could have assured me that our convo was founded on respect.

You would, yes, as it's fairly clear that you think that respect is something that can be demanded of others. I fundamentally disagree with that

There are two kinds of respect:-

• Respect for basic human rights. Should always be given, and everyone has a right to.
• Respect for someone's behaviour, how they treat others and the world around them. No one has a right to demand this kind of respect, and is the prerogative of others.

I have not followed your disagreement, so do not know what sort of respects are in play here, but I really hope both of you do. You are both good people and both contribute greatly here.