United Kingdom: ME/CFS in The Times (including Sean O'Neill)

Times Letters: Research into Chronic Fatigue Syndrome
https://www.thetimes.co.uk/edition/...earch-into-chronic-fatigue-syndrome-w3scg6f9l

https://twitter.com/user/status/1275936688594923520

 

Thanks Robert - I'd just posted about the little quote you'd commented on as being problematic. You got into the Times faster than I managed to post on S4ME!

 

I didn't read everything The Times wrote yet. Did they properly report on PACE yet?

 

Not yet..

 

Will they? Maybe it's time to send a letter. @dave30th @Jonathan Edwards

 

What would you see as the benefit of doing so?

 

For me, the most important thing is that someone who was such an established figure in a Tory government is supporting the need for ME research. By doing so, he is implicitly stating that the current knowledge level is insufficient - I'd suggest that's quite a blow to the BPSers.

 

Renewed pressure on The Lancet to correct or retract. PACE plays a large role in the problems The Times describes in its articles.

Without the misleading claims of recovery and the exaggerated claims of improvement, parents of children declining GET would not be seen as guilty of child abuse.

PACE appears to confirm the cognitive behavioural model where patients are essentially seen as delusional (in the sense of believing to suffer from a severe neurological illness that causes PEM while actually just misinterpreting the symptoms of deconditioning and perpetuating the deconditioning through excessive rest). That probably plays a large role in doctor-patient relationships often being so poor and there being systemic neglect as well as lack of research. Someone that fully believes in the cognitive behavioural model must logically avoid treating patients as if they are medically ill or risk reinforcing their delusions. The correctness of the model also implies there wouldn't be much to find with biomedical research because there's no biological process holding patients back... just a psychological one.

The Lancet's failure to acknowledge problems with PACE is an error that must be corrected. The Lancet had one job: to ensure minimum quality of the published research and it failed miserably.

 

EDIT in response to Andy

Yes...but what fundamentals have changed since the time he was in office. For these purposes press interest is not deemed fundamental.

 

Sorry, my question was too short. Obviously I know why it would be advantageous to get a full and proper debunking of PACE in the Times, but I don't see that now is quite the right time for that. The narrative in the Times currently is that ME patients aren't supported and cared for enough and that the funding for DecodeME is really important to address that.

I personally think that it would be best to give that narrative time to establish itself for a while, before following up with a look at PACE, given that, inevitably, any discussion of PACE becomes fractious. Currently the BPSers have less of a hook to hang a counter argument on against this weeks narrative, if PACE is introduced then they will feel they are on stronger ground (even if they actually aren't).

In short, tactically, I think it would be better to wait. This Times writer seems invested in the subject, and hopefully he is already in contact with Dave Tuller, so that if and when PACE is covered it can be more of a knockout blow.

 

I'm really sorry, I don't understand the point you're trying to make.

 

It would be reassuring to know that he is working on PACE. The Lancet has to retract or correct eventually.

 

Agree. Support from across the political spectrum makes policy change both more likely and more durable when it happens.

Also agree that now is not the moment to push PACE at The Times. Overall this round of coverage is quite good so far. Give it time to sink in.

 

Is anyone able to paste screenshots of the letters here?

 

Excellent letters. Thanks, @Robert 1973 .

 

He was Secretary of State from 2012 to 2018. I am amenable to the argument, should anyone care to make it, that, as such, he was in no position to influence government policy, but many things could have been differently in those years. He was happy to take on the junior doctors - less happy to take on the senior ones. The roll out of IAPT continued on its merry way in those years. Why the newfound views, when he is no longer in nominal control?

 

Perhaps because in the time between has changed his opinion, or that he always held this opinion but the internal politics of the Tory party meant that he had to keep quiet for the sake of his career. I'm obviously guessing, I have no additional background knowledge - this also doesn't change about how I feel about him and his actions when in office, but I am ready to accept his approval of and support for the study as that will increase support from people who might not otherwise do so.