Petition: Opposing MEGA

[Molly98]

But the scientific, objective evidence shows ME is an organic disease. This is therefore not a point of view, it is verifiable fact, a fact being a concept which can be proven.

And these facts invalidate the BPS view, the BPS view has been proven to be wrong.

So there should be no place whatsoever in any ME scientific collaborative for the BPS view or for those who persist in promoting it, end of story.

Absolutely agree @Daisy May, there is no combining the two, it's not possible to have both existing side by side in the same organisation because one,the scientific fact, replaces the other, scientific ignorance ( before fact or before factual evidence). Any compromise is a compromise of the truth for fantasy and more importantly a compromise of our health and our lives.

There can be no sitting on the fence and giving the benefit of the doubt anymore.

It is not possible to unknow what we now know, if charities and other scientists involved do not act on the information which has come to light over the past couple of days then they will also be guilty of burying their heads in the sand and denial of fact just as Crawley, Holgate, Wessley and White etc are. They can not be bystanders to this and allow it to go ahead, they can not turn a blind eye, and we should not let them.

 

[BurnA]

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'

You have is backwards Charles.

That is life within the CMRC village.

In the rest of the world, the one that recognises science, they value results from good quality trials and not views based on flawed research.

So, you are in the tent but afraid to ask a basic question ? Why would that make you or anyone uncomfortable - I genuinely don't understand .

 

[charles shepherd]

You have is backwards Charles.

That is life within the CMRC village.

In the rest of the world, the one that recognises science, they value results from good quality trials and not views based on flawed research.

So, you are in the tent but afraid to ask a basic question ? Why would that make you or anyone uncomfortable - I genuinely don't understand .

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…….

 

[Graham]

As I understand it, the MRC formed the first committee to look at research into ME/CFS after the critical report to the Chief Medical Officer in 2002, where it was suggested that substantial studies into the diagnostic factors of the illness were urgently needed. No such studies appeared. In 2006, following the more specific criticisms of the Gibson Inquiry, the committee was reformed and renamed, with Stephen Holgate in charge. Still no such studies appeared. In 2010 there was an Early Day Motion signed by 123 MPs, and, under that pressure, the MRC announced that it would fund 5 relatively small biomedical studies: we hoped at least that this would be a start, but in fact it finished there (apart from one small recent follow-up). The committee was renamed and reorganized, becoming the CMRC. So, in reality there has been a committee looking at this for 14 years. In all that time there have been many millions spent on psychosocial studies, but still no funding of large biomedical investigations. After 14 years they need patients to sign up to a bland request for support.

We read Keith's account - are we surprised?

But they are puzzled?

 

[Barry53]

Dear Jonathan,

... for reasons that baffle us there is an internet campaign (a petition, I believe - OMEGA ...

Kindest Regards,
Stephen

This just seems so disingenuous.

For me the whole issue is about trust, and trust is as much about attitude and track record as anything else. And just the same as with personal relationships, if you cannot trust someone in the small ways, you instinctively know it is unwise to trust them with the bigger issues. I am not for one moment suggesting the above, on its own, is the be all and end all, but trust is not simply about behaviour, but about patterns of behaviour; the behaviour patterns exhibited by CMRC and MEGA worry me greatly.

I have been trying very hard to stand back, and remain prepared to support MEGA if I could feel confident it really will stand by its claims of good science and biomedical research. But Esther Crawley and her recent media manipulations, along with this recent episode with Stephen Holgate, has finally killed it for me.

I have been asking myself the question: Which am I most likely to seriously regret in the future? Supporting MEGA, and finding all our worst fears to be true? Or voting against MEGA and realising too late we were all wrong? My experience of human nature tells me that manipulative people (EC is my primary worry here) never ever change (they just find new ways to cast their spells), and I cannot now help but see MEGA as a poisoned chalice. MEGA could/should be a dream to strive for, but sadly (very sadly) I now think it would just be a broken dream.

This is far from a snap decision; I have been deliberating the pros and cons of this for a good while now, and just like my Brexit vote (which for me was around a 40:60 split), MEGA has also been far from clear cut for me. But the scales have been slowly tipping, and for me have now finally gone all the way.

I shall now be supporting OMEGA. MEGA-like study with trustworthy good science, yes; MEGA, no.

 

[BurnA]

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…….

Ok. If you are suggesting your vocal contributions led to White resigning, that's great.
But then I am even more puzzled why you wouldn't ask for a statement on PACE.

You seem to have success in dealing with White, requesting a statement on PACE would seem like a minor request in comparisson to causing a board member to resign.

 

[Jo Best]

In case you missed it @charles shepherd -

In the spirit of transparency would you @charles shepherd please now publish your originating email to Stephen Holgate. Thank you in anticipation of your cooperation in this matter.

 

[AndyH]

If Esther Crawley genuinely called PACE a great trial in the recent past I cannot see how she can put in charge of serious science. I actually thought she was too clever to make such a fool of herself.

BBC Radio Bristol 5 Nov 2016 quotes by Crawley:

about PACE...
"Absolutely, it was a great, great trial. It's difficult to do trials in this condition but they did as well as anybody could have done."

and then to cover up why children don't recover in the normal sense of the word by blaming the children themselves...who's the medic?
"From what I've found in my research, how you define recovery depends on who you are. So every child we ask how to define recovery comes up with a different definition."

Then of course her criticism of the re-analysis...
"The reanalysis just looked at recovery."
and
"The re-analysers first did the reanalysis based on what the authors originally said they were going to do. That reanalysis is entirely consistent with the original results. Then they did the reanalysis using a different definition of recovery that was very much harder to reach and the trial just wasn't big enough to show a difference and they didn't show a difference. You can pick and choose how you redefine recovery and that's important research but the message from the PACE trial is not contested. The message is if you want to get better, you are much more likley to get better if you get specialist treatment."

All pretty appalling stuff from Crawley. I note the goalpost being moved agsin from CBT and GET are great to SMC; yet there was no way to define if those with SMC alone would improve more tgan those without. In fact, one of Chalders papers sugested much better rates of tecovery without SMC than PACE showed with SMC.

The whole psychosocial group maintains their gravy train through a perpetual play on words and self promotion and importance

 

[Barry53]

If Esther Crawley genuinely called PACE a great trial in the recent past I cannot see how she can put in charge of serious science. I actually thought she was too clever to make such a fool of herself.

In my experience no matter how good such a person's IQ is, their own over-confidence in their own cleverness is their greatest weakness.

 

[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'

I think most people recognise that there's a majority BPS attitude inside the CMRC tent. It's certainly clear that only BPS proponents of the CMRC, other than perhaps one are involved in MEGA. It's high time they cane out of hiding in your tent and answered some very serious questions.

 

[GeoffSci]

That is truly appalling Keith and I'm sorry to read that you've been treated in such a reprehensible manner. Cabal is spot on, they function in a similar fashion to an organised crime network. This exposes just how disingenuous Holgate was being in his supposed bemusement at patients opposing MEGA, why would any ME sufferer want this corrupt shower of BPS followers involved in investigating their disease? It's long past time that Holgate resigned from the CMRC and took Crawley with him.

 

[Barry53]

From reading Charles responded to a query from Holgate about what was going on at IiME simply by saying 'why not just ask Jonathan?'. He may have been a little surprised by the tone and title of the email that then got sent to me.

That was my reading.

Edit for clarification: Realise my above response was ambiguous. I always believe that @charles shepherd is very genuine and sincere in his intent, and I hence believe any suggestion by him to encourage communication was also the same. But I felt the content and thrust of Stephen Holgate's email might not have been what Charles anticipated.

 

[charles shepherd]

As I understand it, the MRC formed the first committee to look at research into ME/CFS after the critical report to the Chief Medical Officer in 2002, where it was suggested that substantial studies into the diagnostic factors of the illness were urgently needed. No such studies appeared. In 2006, following the more specific criticisms of the Gibson Inquiry, the committee was reformed and renamed, with Stephen Holgate in charge. Still no such studies appeared. In 2010 there was an Early Day Motion signed by 123 MPs, and, under that pressure, the MRC announced that it would fund 5 relatively small biomedical studies: we hoped at least that this would be a start, but in fact it finished there (apart from one small recent follow-up). The committee was renamed and reorganized, becoming the CMRC. So, in reality there has been a committee looking at this for 14 years. In all that time there have been many millions spent on psychosocial studies, but still no funding of large biomedical investigations. After 14 years they need patients to sign up to a bland request for support.

We read Keith's account - are we surprised?

But they are puzzled?

Hi Graham

Please could I add a bit of meat to your bone and make a few corrections

Having been involved in this right from the start - I was a member of the Chief Medical Officer's Working Group in the 1998 - 2002 period and our 2002 CMO WG report triggered the first MRC report on ME/CFS research

This was an extremely poor document which was strongly opposed by the MEA

Along with political pressure relating to the very strong bias at the MRC towards funding poor quality psychiatric research (i.e. approval of the PACE trial), but no sense of urgency re biomedical funding, the MRC finally recognised that their post CMO report wasn't satisfactory and something else needed to be done

I was a regular visitor to the MRC in Regent's Park in W1 at this time….

This new initiative resulted in setting up the multidisciplinary MRC Expert Group on ME/CFS which contained, not surprisingly, a broad spectrum of medical opinion (including myself! and Prof Peter White)

However, I believe the group did manage to achieve a very significant shift in opinion at the MRC towards biomedical research into ME/CFS and our final report highlighted a list of research priorities that were very biomedical

I wanted to keep the Expert Group going but the MRC took the view that we had produced a list of biomedical research priorities and they had produced £1.5 million of ring fenced funding for 5 biomedical research studiies (which was linked to the work we had been doing - not the EDM). These are not small studies - the average cost was £300,000.

Since then the MRC has issued a highlight notice encouraging research applications relating to neuropathology - which links in with the fact that Prof Hugh Perry, a member of the CMRC Board, is chair of the MRC Neurosciences Board

The MRC has also held workshops and other initiatives to try and encourage researchers to submit research grant applications covering ME/CFS - with not a lot of success

And as we heard yet again this week at the MRC, there is still a major problem in getting new researchers into this area of medicine and getting them to submit good quality research grant applications to the MRC

We are no longer in a position where the MRC is turning down biomedical research - it just isn't being submitted in the volume that it should be

Of course, the MRC could do more, and I would like to see repeat of the ring fenced funding

But out in the real world this ain't going to happen at the moment…….

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

 

[JoanDublin]

This is life outside the ME internet village .....'

What does that mean?

 

[Barry53]

my dealings with the CMRC

My Dad used to say some things were "rotten to the core". That is how this seems to me.

 

[charles shepherd]

That was my reading.

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…….

 

[TiredSam]

The big tent seems to be very much an inner circle of schemers, and some well-meaning but largely excluded people and organisations on the periphery. Any chance for those of you with ethics to have a little chat, leave en-masse and let the wider world know exactly why ?

I've just realised what kind of tent it is - it's an Oktoberfest tent. To get on the inside you have to book months in advance, know the right people, or be a beneficiary of corporate hospitality. Once you're in there's an oompah band and you can get drunk and dance on the tables.

If you haven't managed to get advance tickets by January or don't have powerful contacts on the inside, you can still visit the tent, but you only get to sit at the tables and benches that surround the outside of the tent. You can still drink the beer and order the schnitzel and it's jolly enough, especially if the sun shines. When the security guards open the door to guests with reservations you can hear the oompah band, but if you walk towards them they start to glower at you in a screening kind of way, and if you try to get past them they'll punch you on the nose.

And when it starts raining:

Still, I actually prefer it on the outside in some ways, mostly because when people talk they actually hear what each other are saying, whereas inside the tent they just grin stupidly at each other and nod, as the band plays on ...

 

[charles shepherd]

What does that mean?

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'…….

 

[BurnA]

And as we heard yet again this week at the MRC, there is still a major problem in getting new researchers into this area of medicine and getting them to submit good quality research grant applications to the MRC

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 ?

 

[Barry53]

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!

Which is one more nail in the coffin for me. Acceptance is an important part of dealing with things that can never change.