If you want to gain some insight into how Professor Stephen Holgate views ME/CFS I suggest you have a look at this video from his presentation to the Edinburgh MESH group:
Thanks
@charles shepherd
This 2014 presentation was interesting. Some bits relevant to MEGA:
3.20 Treatments are really ineffective in a large part. They are helpful but do not actually seek to offset the disease in terms of its underlying causes.
So, Prof Holgate essentially knows CBT and GET don't work - it seems we don't need to tell him that. So, thank goodness, the man can think. But it makes his enthusiastic correspondence with Wessley (wow!) and his willingness to have White and Crawley involved in both the CMRC and MEGA even harder to understand. These people have and are promoting CBT and GET as solving the cause of CFS - correcting the underlying false illness belief, the fear of movement, the deconditioning, the preoccupation with oneself.
3.50 There have been so many zealots thinking that their idea is the cause
Again, accurate in so far as it goes, but raises questions. Is he including the BPS school in his list of zealots or does he mostly mean XMRV? Is he leaving it ambiguous on purpose? He is, after all, speaking to a group of patients and carers and he acknowledges later that it is important that the CMRC has the co-operation of patients. Again, why would he consort with these BPS zealots and allow them to inflict their harm on patients (Lightning process for children springs to mind)?
7.15 Patients tend to think it is a physical condition and the medical profession tend to think it is a psychological condition. There is a perception problem.
Again, accurate but he's fence sitting. Who's perception is faulty? I note he isn't a patient.
10.45 The quality of research ... is really quite poor. ... much speculation and conjecture
Yep, accurate again. But why facilitate more such poor research? Why not join the fight to get the PACE data released so that the problems with so much of the BPS research can be understood and not repeated? Why allow patients to suffer when the treatments supported by this poor research are forced upon them? Why be surprised when patients express their displeasure about the quality of the research?
11.30 My belief is that we need to forget all that stuff that went on in the past, draw a line under it all.
Ah, perhaps this hints at an answer for this great difference between what he is saying and what he has done. Prof Holgate does seem to care a bit about patients but he is very much of the establishment. Those patients may have been given a rough trot in the past, but let's all pick ourselves up, pull our socks up and march forward, chaps, as one big happy team, with me leading. (yeah, I know, damn antipodeans don't know their place).
And maybe forgetting about the past and starting afresh would be fine. Except its not just stuff that went on in the past. It's still going on. Most doctors in the world who actually know what CFS or ME is know that the treatment is positive thinking, CBT and exercise. No one in the UK establishment or Cochrane has corrected this view even though it seems the Chair of the UK CFS/ME Research Collaborative has known well since at least 2014 that the treatments are ineffective. The manipulation of data that went on in PACE was extraordinary and researchers who did that are still feted as ME experts and invited to help design more research. Crawley is still getting children to do GET and loudly proclaiming that they love it.
Prof Holgate did at one point express surprise at how many patients rated their illness level as severe. At the beginning he says that the illness can be quite debilitating, especially at the more severe end of the spectrum. Well, yes. Actually, even a 'mild' level is life changing and awful. I wonder if he has actually seen bedridden ME patients? Surely he has, but if not, then that might be one way to help him understand the seriousness of what some of his colleagues have done and why they can not be allowed to continue to work in the ME field.
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Then there follows detail about genomics, proteomics, personalised medicine and the establishment of the CMRC to bring scientists from many different fields to work on sorting out ME.
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43.10 And that sort of research is going to require tremendous co-operation from the patients on one side and the highly sophisticated researchers on the other.
talking about the CMRC conference...
We have got a whole day of science. But then we've got a half a day for patients and carers to come and interrogate the scientists about what they are doing and, hopefully, help join us on this journey.
Cos, like, we need your DNA. Oh, yeah, your brains too probably. Oh? No, not for your ideas you dear unsophisticated patients, I mean to look at in an MRI machine. (I know, that comment is mean-spirited of me.) Prof Holgate is trying to talk about patient participation, but I think it doesn't come naturally to him.
on one of the slides about the CMRC
* Work collaboratively and professionally
*Not harass or abuse researchers
So, all in all, the video left me still with many questions. I hope Prof Holgate will come on to PR to explain why White and Crawley have a place in MEGA and the CMRC.
