David Tuller: Trial By Error: The CFS/ME Research Collaborative Conference

Trial By Error: The CFS/ME Research Collaborative Conference

So I attended the CFS/ME Research Collaborative conference two weeks ago in Bristol. The two-day event was a refreshingly PACE-free zone–as far as I could tell, I was the only person who mentioned that piece of crap in public comments. (Although I wasn’t on the schedule, CMRC vice chair Chris Ponting, a professor of genetics at University of Edinburgh, suggested that I speak for a few minutes at the end of the first day.) Other than that, the event focused almost exclusively on biomedical rather than psychiatric issues. No one promoted treatments based on the theory that deconditioning and “unhelpful” illness beliefs were root causes of the illness. None of the presenters endorsed the biopsychosocial approach.

 

Does this represent a positive culture shift? It certainly seems to do so.

Although this conference was not necessarily the place to do it and although I applaud the steps forward by the CFS/ME Research Collaborative, do we still need to see them formally rejecting the bad science and bad practices involved in PACE and the associated current research such as MAGENTA and FITNET? Can we fully trust Holgate or even Ponting until they take a clear stance on PACE such as signing the letter to the Lancet?

 

Holgate - I think without Esther Wurmtongue whispering sweet BPS nothing's into his ear, he has finally realised where the weight of evidence lies. I'm not sure i trust him though.

Chris Ponting I trust. And it might be that him not having signed that, or similar, letters may help him when he's dealing with the powers that be in regard to funding. If he signed it then they might more easily write him off as just another of those letter writing activists, by not signing it his arguments can focus more on the science.

Just my opinion and I could very well be wrong.

 

I certainly understand this perspective and would not counsel anyone to let go of their skepticism about the organization. My goal was to convey my impressions of the meeting. I'm obviously not privy to people's motivations or thinking. I think Ponting took a clear shot at PACE in March with his very reasoned but pointed comments to the SMC about the reanalysis. I am fully convinced of his sincerity and good faith. Does that mean he'll be able to accomplish something of what people hope for? Not clear. And yes, it would be good if a point comes when all the CMRC board members feel they can sign something like the Lancet open letter. To be fair, I haven't asked anyone to sign it since the last time I sent and posted it in August. My main hope then in re-posting it was that it would trigger news coverage. Since that happened, it's not clear to me whether or when it should be sent and posted again, although I guess high-profile signatories coming on board would be a good excuse.

 

This sounds very possible to me. I don't know if that's the calculation, and if it is I don't know if the calculation is correct--in other words, would he be written off that way if he signed? I have no idea. But this might be an element of what's going on.

 

.....the cynic in me wonders if the change of tone is partly to get support for a new MEGA project(?)
Although, she-who-must-not-be-named is no longer directly involved in the CMRC (as far as we know),
there is still the Bristol Biobank.

see: https://www.s4me.info/threads/new-crawley-research-morph-cfs.1800/

 

Thanks very much for this account, @dave30th - very much appreciated by those of us too sick to attend the conference. Very good to hear the direction that the CMRC is moving in.

@Action for M.E. - any update on when we can expect to see the conference presentations on YouTube, please?

 

Funnily enough

https://www.meassociation.org.uk/research/cfsme-research-collaborative/

Personally, my largest concern with MEGA was always Crawley's, and any other BPSers, involvement so, depending on the finer details, it may well be that I'd be happy to support a future MEGA 2.0.

 

Seeing SH in operation mode since about 2003, both as a member of the Royal Commission on Environmental Pollution and then the Collaborative makes me apprehensive.

He's an "establishment", don't rock the boat man, in my view. He seems to say the "right" thing at the right time, to the "right" audience.

But oh so different and divergent audiences...... Professor Coggan ( Epidemiologist at Southampton- a known ME foe.....) He tutored Dr Ira Madan of Kings (NHS PLus Occupational Health Guideline on ME and CFS fame)
Professor S Wess, on the MRC panel refusing legitimate research applications like Julia Newtons years back.
He is also a "hand wringer, "- Oh, my whiskers, what is to be done....?" Instead of just biting the bullet and dealing with it all.......

Ignore if you wish, just a personal set of observations going back a long, long time.

I wonder, has he entered the debate about the allergy deaths recently?

Although he allegedly co authored, "Allergy the Unmet Need"-
https://www.bsaci.org/pdf/allergy_the_unmet_need.pdfmany years ago- things are not improving on that score in terms of Government action and support.

 

Although he allegedly co authored, "Allergy the Unmet Need"-
https://www.bsaci.org/pdf/allergy_the_unmet_need.pdfmany years ago- things are not improving on that score in terms of Government action and support.[/QUOTE]

In terms of the history of disease and conditions, this report could be written with ME substituted.............
As chair of the MRC in 2003, what has SH to show for his 15 year MRC tenure on Allergy/Immunology, his specialist area?

 

If I look back to the conversations we were having about the CMRC just a year ago, you couldn’t believe how much could change in such a short space of time. I’m sceptical but it’s nice to have a bit of hope when that level of research money is being talked about for biomedical research funded by the UK.

I half expect a nasty twist at the end but it’s nice to think it might happen and that everyone’s time and effort (and personal sacrifices) to bring us to this point hasn’t been wasted.

 

I'm not used to good news stories from Tuller!

Thanks for the view from the conference. Wish I'd been able to see the reaction to Tuller's bit.

 

Very encouraging.

 

I have trained myself not to get excited even with purported good news--for the very reason many patients are so skeptical. Many people have waited so many years for some progress that I understand why everything seems like a false start. I have no idea what will happen going forward or what the best scientific approach should be, but the entire group seemed pretty committed to the idea that this is a biomedical issue. And since my main focus in this whole mess is self-evident, it could not have been surprising that I would call PACE a pile of crap (or something similar) and explain that I hadn't been there previously because of the actions of the former vice chair.

Frankly I can't really remember what exactly I said. Once I start talking about this stuff, I sometimes get so agitated I say things in language not often heard in respectable academic settings. I think I avoided that this time, but the video will reveal all! However, I can state with full confidence that I did not tear up any academic papers nor did I strip to my underwear to demonstrate that "the emperor has no clothes." (That was my first thought at the IACFS meeting in Fort Lauderdale before I settled on the more modest option of ripping the PACE trial to pieces.)

 

The benchmark is the 'Can you see me now?' naked woman from the London #MillionsMissing protest...

 

Exactly DT, in 2009, we convincingly proved our case locally for a new service (or reinstatement of the lost consultant one).

This post and the following discussion has been moved to this new thread:
UK campaign for better ME services in Suffolk and Norfolk

 

Whatever it is that is going on, I would guess Chris Ponting is having to brush up on his tightrope walking.

Did you get any sense of wanting to make a clean start? Of wanting to distance themselves from EC's BPS legacy? Of seeing biomedical research into ME as a really interesting and potentially fulfilling (and maybe even career-benefiting) area of research?

 

Ira Madan attended an ME APPG about a decade ago and she was singularly the worst person I saw in my four years of attending them. And I saw Crawley twice in that time.

 

I'd say yes--I got that overall sense in regards to all three questions. Not that it was stated so directly, but implicitly it felt that way. As I said, none of the presenters besides me mentioned the former vice chair at all--at least that I heard. I mean, I did leave the room sometimes to hit the toilet or stretch my legs. And once I left for 20 minutes to go to the mall across the street because I needed some real coffee and not the swill being served at the hotel. I blasted PACE and the reckless libel accusation made by the former vice chair, and no one appeared to be surprised or bothered by my comments--not that they would have told me if they had been. But overall those presenting seemed enthusiastic and interested in cracking the disease.

Of course I'm not so naive to dismiss the possibility that some could have been saying what they thought would play well but were really thinking something else. And as I said, I didn't catch every single word. Plus I'm getting a bit hard of hearing and, even though I sat up front, can never exclude the possibility that I missed something--especially when listening to those speaking with strong accents. (I am about to get hearing aids when I get back to the U.S. but did not want to be fumbling with them for the first time on an overseas trip.)

 

oh dear, hope all goes well tonight