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

[Esther12]

I think in the end we sink or swim through good analysis - I think that is what has happened with PACE and why they are finding it harder to be influential.

Its hard to even try to have any form of control on twitter and I think one issue is the number of people who want their say - but I was wondering if that is partly because we don't feel we have organizations that really give patients a good voice (hence everyone wants their own).

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.

 

[Sean]

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

We need both. Analysis is the foundation on which the politics must be built.

We would have gotten nowhere without the analysis.

 

[petrichor]

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

 

[Snow Leopard]

"I gave it my best shot: I took a position. I'm well informed and have excellent contacts. But there isn't a window. There are just experts and data, both of which are fallible and hard to read.

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.

 

[Hutan]

Posts about GRADE have been copied or moved to
Who Agrees That GRADE is (a) unjustified in theory and (b) wrong in practice?

 

[Snowdrop]

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.

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.

 

[Invisible Woman]

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.

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.

 

[Arnie Pye]

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

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.

 

[Trish]

Finger-wagging is a lot of the content on S4ME. IMO it's worth aiming some of it at ourselves rather than just outwards to others.

Is this a statement of intent that you will stop finger wagging at the rest of us when we are critical of the actions of journalists who get it wrong, and so called scientists who use the media against us?

I think we need to be clear where the blame lies in these instances. If the BPS people hadn't taken so firm a hold on the media and the clinical approach to ME/CFS for decades, we wouldn't be in this position of needing repeatedly to point out the errors of fact in the media. Of course there will be some anger, some passion in the protests at misrepresentation. We are the victims here, not the perpetrators of this travesty of science and justice.

Journalists understand that - they see it every day on the issues they write about. That's what a good investigative journalist does. They dig into the reasons behind the public anger and distress. That's what makes a good story. And if they get it wrong, they expect to be told. A good journalist is not going to be put off investigating something just because a few people on social media get a bit angry or upset.

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.

As I said above, I profoundly disagree with this. Why should we politely look the other way when a journalist mistakenly presents statements from the likes of Sharpe and Crawley as theough they were from trusted authority. Journalists need to be reminded of the difference between eminence and evidence, as David Tuller has done in his posts.

If I recall correctly David Tuller himself says he got drawn into his lengthy commitment to ME/CFS after the criticism he got from patients when he published a piece that took the BPS story at face value. He had the guts to say he'd got it wrong, and the commitment to putting it right. Why shouldn't we ask that of other journalists too?

 

[Sean]

That's what makes a good story.

And, boy, is there a story here. Just not the one that has been dominant for the last 3 decades.

 

[Solstice]

Is this a statement of intent that you will stop finger wagging at the rest of us when we are critical of the actions of journalists who get it wrong, and so called scientists who use the media against us?

I think we need to be clear where the blame lies in these instances. If the BPS people hadn't taken so firm a hold on the media and the clinical approach to ME/CFS for decades, we wouldn't be in this position of needing repeatedly to point out the errors of fact in the media. Of course there will be some anger, some passion in the protests at misrepresentation. We are the victims here, not the perpetrators of this travesty of science and justice.

Journalists understand that - they see it every day on the issues they write about. That's what a good investigative journalist does. They dig into the reasons behind the public anger and distress. That's what makes a good story. And if they get it wrong, they expect to be told. A good journalist is not going to be put off investigating something just because a few people on social media get a bit angry or upset.



As I said above, I profoundly disagree with this. Why should we politely look the other way when a journalist mistakenly presents statements from the likes of Sharpe and Crawley as theough they were from trusted authority. Journalists need to be reminded of the difference between eminence and evidence, as David Tuller has done in his posts.

If I recall correctly David Tuller himself says he got drawn into his lengthy commitment to ME/CFS after the criticism he got from patients when he published a piece that took the BPS story at face value. He had the guts to say he'd got it wrong, and the commitment to putting it right. Why shouldn't we ask that of other journalists too?

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.

 

[Sly Saint]

straight away it kicks off with this
how many times......
IT IS NOT CHRONIC FATIGUE.

eta; sorry I haven't read the rest of the article.

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

 

[Barry]

I guess my complaint is not entirely about the way Tom Chivers has framed this part of the story. It's more that the BPS people keep using it as an excuse not to engage on the subject. This in particular:
"Another researcher, who I know personally to be pretty fearless, told me when I tried to speak to them for this piece: “I’m afraid I don’t go within a million miles of ME/CFS these days. Just too much grief.” ME/CFS patients have a reputation for being angry."

Why did Chivers have to add 'who I know is pretty fearless' to his reporting of this. It makes it sound like the so called attacks are really major, yet we've never seen any evidence of this, nor has Tom Chivers reported that he's seen any such evidence. He seems far too ready to take these excuses for not engaging at face value.

But I'll say no more about this. As I said, it's fairly a good article on the whole.

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.

 

[Barry]

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

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.

 

[Invisible Woman]

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.

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.

 

[Barry]

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

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.

 

[Dx Revision Watch]

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.

Did Tom not say he was getting the headline amended?

 

[Simbindi]

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/

Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness.

CFS is also known as ME, which stands for myalgic encephalomyelitis. Many people refer to the condition as CFS/ME.

etc.

 

[Esther12]

Finger-wagging is a lot of the content on S4ME. IMO it's worth aiming some of it at ourselves rather than just outwards to others.

Is this a statement of intent that you will stop finger wagging at the rest of us when we are critical of the actions of journalists who get it wrong, and so called scientists who use the media against us?

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.

 

[It's M.E. Linda]

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.....

@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!