What we're not being told about ME - UnHerd (Tom Chivers)

To me, PACE is an example of how important politics over analysis is, not the other way around.

I agree that no-one can control what others say and there's always going to be nonsense. But the same is true of journalists and academics. We still do finger wagging there.

I agree a lot of patients do feel without a voice, and without much power over their own lives. I think that this can encourage a desperate nihilism in the way they (we) engage with others. I don't think many journalists are going to be particularly understanding when on the receiving end of that.

To me, pointing out that people have been criticising it at Berkeley and Princeton isn't much of a rebuttal to people defending PACE from the MRC, HRA, etc. I think we've gone backwards on PACE, on the basis of politics rather than argument, and that's probably going to mean some regrouping and a more cautious tone on some of these points.

 

This second piece demonstrates some of the issues with all of this. People are being asked to distrust people that they usually put a significant amount of trust in and respect a lot. If I didn't have ME and I had two people with expertise I trusted tell me the things Tom was told I would probably trust them. I'm usually not the kind of person that puts weight on what people say on social media over what people with expertise and experience say.

So I understand where Tom is coming from. And it isn't an easy thing to be told you need to delve into these muddy scientific waters and decide whether the experts are actually right and being honest.

Which is all a shame because it means the royal colleges can get away more easily with stopping an evidence based independent process because of the views of clinicians and bad ad hoc reasons. What can you do? I'm not sure

 

It's the classic journalist approach - they don't assess truth, they simply interview people and report what they say.

The mistake is assuming the opinions of experts is relevant when the quality of the evidence is poor.

 

I'm not exactly a ray of sunshine but I do think there might be a small opportunity with regard to people who know nothing about life with ME to understand better. There are many falling ill as we know with long-covid and experiencing long-term symptoms that are so similar to ME. I have spoken to one person (on the phone) who fell ill March 2020 and is still very ill with a number of symptoms. They wanted to speak to me explicitly to let me know they now understood. They previously took the status quo version to be correct.

There are probably many others now out there who may in the future provide a rather compelling account of how differently they see things now they are ill.

 

I don't believe that's true anymore

Considering news reports on climate change, Brexit, topics to do with migration etc lots of people get upset, ranty and shouty. I agree it can sometimes distract from the point they may be trying to make but it's increasingly the norm.

In fact at times I think the media positively encourage it.

 

I've only started making this distinction in recent years - but I think there are people who are journalists and people who are reporters. Or there are people who switch from one to the other and back again depending on what their remit is for a particular piece of work. For example, 99.9% of the work done for local news in the UK is reporting, in my opinion, not journalism. In the bigger, more traditional, media, such as The Guardian, The Times etc, there is a lot of reporting, and only a small amount of good journalism. Even BBC News does a lot of reporting and very little journalism these days. What journalism there is usually occurs in documentaries outside the News programmes.

 

If he publishes a trash story uncontested, I don't really see what there is to lose by setting him straight. Preferably this is done by people with calm and a good handle on the situation, but I can't blame people for being angry.

If he gets put of writing any further on M.E. then that's too bad, but if he would continue to write and keep anonymously quoting those people that apparently have his ear, then that's worse.

 

if he couldn't grasp this basic concept, what hope that he would understand all the rest.

 

Moreover, it has nothing to do with the validity of the science! If Chivers wants to get to the bottom of any 'harassment' claims, he needs to get to the bottom of whether it is harassment, or is instead justifiable scientific critique. And he will not get to the bottom of that unless he puts the harassment stuff to one side initially, and just focusses on the science instead, to at least enough depth as he needs to, which in truth is not that much providing he manages to distinguish between the science and the pseudo science. The BPS folk of course want him to have no chance of achieving that.

Maybe he needs to be given a list of all the real scientists who fully recognise and decry the BPS pseudo science.

ETA: And above all Chivers needs to maintain an open mind.

 

Trouble is, these are the very things that are hard for novices to this illness to grasp, especially if they do not themselves have the illness. Such things can seem so trivial and so blatant to people in the know, that it can be very hard to step into the shoes of those trying to get up to speed. Especially when there is so much disinformation out there, making it hard to to know what is the genuine info.

If Chivers genuinely wants to get to the truth, and is savvy, determined, and a competent investigative journalist, then hopefully he'll get there.

 

The conflation of chronic fatigue and chronic fatigue syndrome is at the core of the BPS strategy.

I've had GPs repeatedly call it chronic fatigue even though I immediately corrected them and said it's chronic fatigue syndrome. Until I finally snapped "stop that!" . I got a look of shock and had to explain one is the most common symptom on the planet and the other is a syndrome that actually hasn't a whole lot.to do with being tired that affects a fairly small number of people.

So, if an experienced GP doesn't get it....

I shouldn't be at all surprised if whoever whispered in Tom's ear referred to it as chronic fatigue either. Just to plant the idea. I think they are probably delighted that he omitted the word syndrome as they know it will cause an angry response.

 

Unfortunately it has been a highly successful propaganda campaign for them, and as SW's words from way back confirmed (wanting to call it CFS/ME rather than ME/CFS for that very reason), has facilitated and fostered abuse of the f' word down the decades.

Chilvers understandably, as a newcomer to all this, scoffed at the notion of conspiracies etc, but the truth is the BPS pseudo science only stays afloat by virtue of conspiring amongst themselves to keep it so, and to keep the reality of their non-science hidden from view. Which is why the new guideline is such a disaster for them. In a way, the more this charade goes on, the more the BPS pseudo science becomes exposed, and the more the BPS 'scientists' double speak becomes evident to all. If it were only themselves paying any penalties then I would have some sympathy for them, but so many people have paid, and are paying, and will continue to pay, for the arrogant, wilful incompetence of these sham scientists, that I have no pity for them whatsoever, they deserve all the get - within the bounds of law I emphasize.

 

Did Tom not say he was getting the headline amended?

 

Let's not forget what happens when people do a Google search. I put in 'NHS chronic fatigue', the very first link in Google brings up this:

Symptoms of chronic fatigue syndrome (CFS/ME) - NHS

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

etc.

 

Not sure what you mean. Nothing wrong with being critical of anyone, depending on how and why it is done. It always depends on the specifics, and it's worth criticising some forms of criticism.

 

@Invisible Woman

I also experienced the ‘chronic fatigue’ usagewith the senior partner of our GP practice during the ‘Group 6 issue’ earlier this year. Every time he used cf, I repeated ME/CFS. I will remember to be more assertive next time!