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

https://twitter.com/user/status/1275873853269565440

 

There was this from a few years ago: https://www.thetimes.co.uk/article/findings-of-5m-me-chronic-fatigue-study-worthless-89z8x0xzr

 

Agreed ... however, putting my pragmatic hat on after first removing my indignation one, having Hunt's letter there as a clear public endorsement of this funding for a major ME/CFS study is highly beneficial I think. With a bit of luck, aside from being a truly great scientific step in the right direction for pwME, it might also become a new bandwagon politicians may see kudos in supporting. Yes it niggles when politicians switch sides, but if they switch to your side with the potential to significantly benefit the cause ... pragmatism is key I think. I'm sure the likes of SW have cultivated influence in the corridors of influence and power, so anything that cocks a snoot at that gets my vote.

 

Precisely! Let's not look a gift horse in the mouth.

 

Yeah don't underestimate the significance of this. It's a big shift in public attitude.

 

One wonders whether Boris Johnson's covid 19 had anything to do with Jeremy Hunt taking this more seriously.

 

Yes, although Hunt is no longer in the Cabinet (and aside from the fact I'm not overly enamoured with him!) he will have the ear of many influential people in and out of government. I think the funding of this study is quite a watershed, because it is so high profile it simply cannot be ignored, so people are having to take sides. And people like JH are deciding their bread is best buttered by coming down on the side of this study and what it represents. The more the merrier.

 

Maybe, but I suspect it is just a highly political animal shifting to what he considers to ultimately be the winning side. Good.

 

Very much agree with that. It would be shooting our self in the foot.

 

Two more letters on ME in Friday’s Times:
https://www.thetimes.co.uk/edition/...ng-and-the-call-for-a-public-debate-62qwqc2vv

@Jonathan Edwards I wonder if I could persuade you to write to The Times in response to the first letter. It might be a good opportunity explain some of the issues to a wider audience, and people tend to take more notice of medical professors. I even wonder if you might ask Sean O’Neal if The Times would like you to write a comment piece, as it seems to be keen to support people with ME at the moment

 

I'm not sure it would be useful to respond to the first letter. It's a fair point based on a personal story. There are other things that indicate it's of limited significance, but I don't think a direct response is likely to be the best way of drawing attention to them.

 

This.
For all his criticism re COVID, he was in charge when operation Cygnus was undertaken and failed to address the resourcing issues it threw up. The lack of readiness was on his watch.

That said I know of parents who have met with him re issues with ME and he appeared sympathetic and shocked.

 

But the writer strongly implies that those who object to GET are doing so solely because they haven't improved with it - rather than that those who object to GET have strong evidence based on PACE that it doesn't work, and that there is also pretty strong and widespread evidence of serious harm.

 

One is forced to wonder whether Helen Nicholls has considered the corollary of her argument.

Everyone should be required to undertake GET because it works for her.

Allegedly.

 

Helen Nicholls seems genuine. Many people believe that they have been cured of various ailments by homeopathy, reiki, etc etc, because at the time of their improvement that was the thing they happened to be trying. Statistically there will be some people who improve whilst doing GET, just as there were some people who improved whilst taking rituximab. Doesn't mean we should all have it though, or that anyone should have it, or be forced to have it.

 

Letters like this (from Helen Nicholls) do us so much harm. It “horrifies” her that others won’t get GET?

I wonder if it horrifies her to see children made bedbound through exercise? Or to see adults made paralysed or unable to sit up after exercise? How can she know who gets better (basically, no one, or the few who were getting better anyway maybe - since the hallmark of ME is becoming worse after exertion) or who gets worse? She’s happy to take that chance, knowing, as she surely does, of the hundreds and thousands of examples of harm and harrowing stories of people made incredibly and often permanently ill by it?

 

Writing about how it horrifies her that people won’t be able to get GET because of those of us who “campaign” and “form groups“, is different to writing about reiki & homeopathy though. Reiki and homeopathy doesn’t cause sufferers to deteriorate permanently from mild/moderate to severe or very severe or to the point of being unable to sit up/ unable to walk or paralysed or worse.

 

I hope it goes without saying that I’m very pleased for Helen and anyone else whose health has improved, and I would not wish to criticise her. But I think her letter presents an opportunity to make the general point that anecdotal accounts of improvement following any type of treatment are not useful in determining the efficacy of those treatments, particularly in a condition which has no identified biomarkers and in which some people improve over time, regardless of what treatments they try. That is why we need properly designed and conducted RCTs. And despite being seriously methodologically flawed, PACE and FINE provide us with good evidence that GET and CBT are not effective treatments for ME/CFS, and that the CBT/GET models of ME/CFS are wrong. That is why we need high-quality research like DecodeME to try to understand more about the causes of ME/CFS in order to develop diagnostic tests and effective treatments.

Those are the sorts of points I was thinking of – and I thought they would carry more weight coming from someone with scientific/medical expertise.

[edit – I would also add something about the harms.]

 

It’s ok and valid to criticise someone if they are writing something that directly harms people. I don’t care if she’s got better or not. I care that she’s writing a letter saying she is “horrified” that GET will be removed, and giving her anecdote as evidence, when people have suffered unimaginably and deteriorated for decades due to this apparent treatment, which I’m sure she will know about, having had ME.

But I agree that it would be good to have a letter from a medical professional / scientist about the points you’ve raised.

 

Quite. I suspect there will be a subgroup of those diagnosed with ME/CFS who have a condition, or variant of the condition, that GET somehow works for. She would be right in what she said if the worst consequence of trying GET was that it simply did not work, with no further consequences. But of course that is not the case because a) Some people's physical health declines significantly, and b) For those it does not work for they are simply labelled as not really trying.

It's akin to scattering get well tablets amongst the sick, with a few that work and some that are sure to be poisonous, and those wary of taking the risk being accused of not trying to get better. I understand Helen's perspective, but she is not seeing the perspective of others. Until it is known who can safely be given what treatment, then the current scatter gun approach is unethical and wrong. Maybe this study will help to unravel some of that.