Prof Brian Hughes: The Science Bit: The cries for help are getting louder. And that’s a good sign

[Countrygirl]

I posted this in https://forums.phoenixrising.me/thr...pe-chalder-per-fink-et-al.90388/#post-2438345 but it is too good to miss so I will give it a separate thread.​

It is Prof Hughes's response to the media blitz yesterday following a press release by the BPS cabal that attacked NICE for their refusal to recommend GET and CBT as treatments for ME.

This was probably the press release here: https://www.kcl.ac.uk/news/research...critique-of-2021-nice-guideline-on-cfs-and-me
11 July 2023

Researchers produce systematic critique of 2021 NICE guideline on CFS and ME​

​

Prof Brian Hughes has responded with this excellent article below:​

The cries for help are getting louder. And that’s a good sign​

https://thesciencebit.net/2023/07/12/the-cries-for-help-are-getting-louder-and-thats-a-good-sign/


Prof Brian Hughes

Earlier this year, I wrote about a draft academic paper that had attempted to condemn the new NICE guideline for ME/CFS. As regular readers might recall, the paper had claimed that NICE was guilty of “eight major errors” in its guideline reviewing processes. In my blog post I noted that all eight of these so-called “errors” were not errors at all. The accusations being made were misleading, factually inaccurate, fallacious, or a combination of all three.

The paper has now been published in the Journal of Neurology, Neurosurgery & Psychiatry. I have had a look at the final version to see if any major updates have been incorporated, especially given the widespread public commentary that circulated on social media regarding the earlier draft. But despite the many flaws identified at the time the initial version was leaked, as far as I can see none of them have been rectified.

There have been some minor changes in wording, mostly (it would seem) aimed at toning down the first versions’s conspicuous hostility toward NICE. For example, the first draft accused NICE of “errors,” but these misdemeanours have now been recast as “anomalies.” Similarly, where NICE was previously accused of “downplaying” the importance of fatigue, it is now accused of merely “minimising” it, suggesting less malfeasance. And in the older version, it was claimed that NICE had “failed to synthesise and GRADE trial evidence adequately,” but in the final paper NICE is portrayed as having assessed the trial evidence in a “non-standard” way, which I suppose is better than accusing the NICE

 

[SWAlexander]

I just read it and ask; should we read scientific papers with a more critical mind?

Excerpt:
The first allegation that NICE had made an error/anomaly was itself an example of the red herring fallacy.

The second allegation was an example of an appeal to motive.

The third one was an example of a circumstantial ad hominem argument.

The fourth was an example of a straw man fallacy.

The fifth was an example of the fallacy of special pleading.

The sixth was an example of definitional retreat.

The seventh was an association fallacy.

And the eighth was an example of a fallacy of relevance, otherwise known as a “Two wrongs don’t make a right” error.

https://thesciencebit.net/2023/07/12/the-cries-for-help-are-getting-louder-and-thats-a-good-sign/

 

[Rufous McKinney]

What an outstandingly formulated rebuttal to their baloney. Grateful, to Dr. Brian Hughes.

does anyone know what is happening to individuals who are employed doing GET and CBT? Are they still getting paid to show up at clinics? How is this unfolding on a practical basis?

 

[Countrygirl]

What an outstandingly formulated rebuttal to their baloney. Grateful, to Dr. Brian Hughes.

does anyone know what is happening to individuals who are employed doing GET and CBT? Are they still getting paid to show up at clinics? How is this unfolding on a practical basis?

According to patient reports, some/most are still treating patients with GET by simply redefining Pacing as, in practice, graded exercise or, alternately, introducing terms like 'Activity Management' which is essentially GET.

For example, one patient was taken as an inpatient to be taught 'Pacing', but they actually made her continuously increase her activity level (ie GET) until she became bedridden as a consequence. They then discharged and subsequently ignored her, leaving her without help. She was able to walk into the centre, but had to be taken home to her bed by wheelchair.

Another consultant told a child that NICE has now renamed GET 'Pacing'. The child tried to argue with the paediatriian but the doctor held her ground and reduced the child to tears, Only yesterday, a mum reported to me that the GP has just informed her child that he is going to set up a course of GET for the young girl who has been deteriorating for 15 months.

One clinic did inform a patient not to bother to turn up for the appointment as the only treatment they are prepared to give is GET.

Prof Crawley's paediatric clinic has produced a document that says they use 'Activity Management' as the treatment used on their young patients which they prefer, The author described it as GET.

Another ploy that doctors are using is to rediagnose the patient with FND.....for which the treatment is exercise. One child I know has deteriorated to only about 10-20% functioning under this regime and because she didn't recover within six months, the mother is being blamed for the lack of success of the treatment and the consultant has triggered a safeguarding alert. Social services are taking Mum to court with the intention of removing the child from home and is being given to foster parents. The consultant has refused to permit a second opinion although another paediatrician who specialises in ME has diagnosed her with 'severe ME'. Once fostered, the new parents are expected to enforce GET.

The NICE guidelines are essentially just being ignored by the medical profession and patients are still being harmed.

 

[Viala]

They are getting away with it because their biggest achievement in medical field is convincing doctors to believe 'science' more than to what patients say. It happens so often, not just with ME/CFS people. I guess that's why many doctors are so egotistic, they are being trained that way, to rule by authority and intimidation in order to protect interests of medical industry. So now when a patient is injured or is saying that a therapy is making them worse, everything is still ok by the book. It must be patient's fault so eventually the patient will be discarded, because what happens doesn't fit the 'science' and this science can't be wrong, the patient must be wrong.

Now they are using psychological tricks to deceive everyone, reframing and renaming the same old dangerous therapies as something else. 'GET is pacing' sounds a bit like 'war is peace'. What's worse, they're stealing our knowledge and skewing it. Pacing is about staying in our safe energy envelope, not continuously pushing it by physical exercise, these are two different things. It's manipulation on top of manipulation, redefining what words mean. It is criminal and it's medical abuse. I can only imagine what this psychobabble does to people who learn about ME/CFS for the first time.

 

[Rufous McKinney]

by simply redefining Pacing as, in practice, graded exercise or, alternately, introducing terms like 'Activity Management' which is essentially GET.

appalling, as the system is Financing the bogus treatment. Sounds like audits and government reviews are in order.

Handing over taxpayers dollars to deliver bogus services is pretty scandalous.

 

[gbells]

Well it's from a psychiatric journal. Did you expect them to be honest or helpful? Their job is to brainwash people into thinking that most mental disease is due to poor genetics or hypochondria while they ignore everything else. I consider them the lowest form of health professionals, perhaps just above faith healers.

Remember, this institution sabotaged CFS research for decades by promoting it as a mental health problem so that the governments and private insurers could get out of paying long-term disability claims. See the books "Osler's Web" and “The Why: The Historic ME/CFS Call To Arms” by Hillary Johnson.

For those who want to go down the rabbit hole, watch this psychologist's investigation into how quacky their DSM-V guidelines are.