Guardian Article on NICE pause

[Peter T]

The thing here is they have no real interest in the illness, they are interested in a treatment. The treatment is what was being researched, not ME.

I agree, what we have seen for over twenty years is a devotion to a psychological and behaviour intervention that fits into neat marketable packages, and no interest at all in the conditions it is supposed to treat. I would argue this is illustrated in the ever increasing list of conditions they claim to treat and the ever loser diagnostically labels (eg FND and MUS) used to draw in as many patient groupings as possible.

Further increasingly with FND the misnamed BPS advocates are not even confining themselves to conditions with some ambiguity around diagnosis, but asserting individuals with previously uncontested diagnoses are also showing features of functional disorders, for example asserting that such as clear cut stroke rehabilitation needs to be supplemented with psycho behavioural treatment for the hypothesised functional components.

 

[Sean]

The thing here is they have no real interest in the illness, they are interested in a treatment. The treatment is what was being researched, not ME.

They were researching career advancement.

 

[FMMM1]

https://www.theguardian.com/society...lanned-guidance-me-leaves-patients-distraught

Natalie Grover seems to be getting nearer to understanding the problem, even if still a little way away. Some reasonable quotes from me. Some from Sharpe and Chalder as well.

Yea, sure others picked up on this from Trudie Chalder:
Chalder, the CBT practitioner, said it was unhelpful to see the debate in black and white.
“This kind of dualistic thinking – it’s either psychological or physical – is not particularly helpful when you think about any disease. ---"
Something slightly comic about Chalder's comments - maybe suggest that she tries alternative comedy.

OK it's true but I was a bit worried by this .
"Peter White, a volunteer with the charity group Forward ME, said funding was necessary to investigate the biological reasons behind ME, but much funding was focused on psychological research because people did not know where to begin on the biology. Yet this was because nobody had really ever looked into it, he said, creating a vicious cycle."
At least the article went on to mention the DecodeME study.

 

[Invisible Woman]

"Peter White, a volunteer with the charity group Forward ME, said funding was necessary to investigate the biological reasons behind ME, but much funding was focused on psychological research because people did not know where to begin on the biology. Yet this was because nobody had really ever looked into it, he said, creating a vicious cycle."

I don't think he's wrong in that this is an argument I have heard time and time again over the years.

We don't have any idea what causes it but that doesn't mean we can't help. Which is fair enough.

Then the help is a prescription for anti-d's to help you cope whethet you need, want, have enquired about treatment for low mood or not (& no judgement for those who have). Not help in any necessarily meaningful way.

And for most of the last 2-3 decades we really haven't known where to start. These days things are a bit different hopefully Decode ME will open up some useful areas of interest.

Then because there was treatment for ME, this tended to be seen as someone else's speciality. Even though the treatment often hurt more that it helped. Other doctors weren't aware if this.

Basically we were properly stuffed by the BPS stranglehold.

 

[Jonathan Edwards]

Yet this was because nobody had really ever looked into it, he said, creating a vicious cycle."

This bit I think is wrong and unhelpful. People had tried quite hard in the 1980s to measure everything they thought might be relevant and found nothing.

Not knowing where to start, having screened for all the obvious things, had nothing to do with not having looked or a vicious cycle. I think statements of this sort that imply bias or laziness or whatever don't help the cause of investigating ME.

 

[Invisible Woman]

I'm really only familiar with what went in from the mid 90s. I do know that Ramsey, Behan and Dowsett did a lotof work.

I think statements of this sort that imply bias or laziness or whatever don't help the cause of investigating ME.

I think from the Wessely era on though therev was a bit of a vicious circle from our perspective.

I think this wasn't always intentional & wasn't necessarily bias or laziness on behalf of researchers or the medical profession.

The BPS publicity machine made it sound like they had it all sown up in the media and, presumably, to ther docs. The stigma they created didn't help either.

In addition, I've heard anecdotal reports of new/trainee docs actively discouraged from getting involved.

On top of this there is the problem of trusted sources. This doesn't just hapoen in the medical profession, I've seen it happen in my own work too. Doctors have been as ill served as patients by the poor information or lack of information about ME/CFS. When the goto expert says "move along, nothing to see here" they believe him.

So as a statement I think this reflects the reality of what has happened to us. I don't read it as an accusation against the medical profession.

 

[Hutan]

A large number of posts about a Sharpe parody account on twitter have been moved to
Michael Sharpe on twitter