United Kingdom: Newcastle-upon-tyne Hospital Trust

For example, it is flawed logic to suppose that a trial of CBT or other psychological therapy should somehow attempt to separate the effect of the therapy per se from the effect of the therapeutic relationship. In real clinical practice, it is impossible to have one without the other, and a trial must reflect this reality.

I think this statement indicates just how much these people are rationalising to protect their unhelpful beliefs in their treatment.

I will be focusing on the absurdity of these arguments being raised in serious academic debate in my book. At some point the medical establishment will have to come to its senses and realise that there needs to be more to medicine than cosy political convenience.

The casting of coercion as 'working with patients' or 'people and partnerships are important' is particularly creepy. I never had to defend the way I did medicine with that sort of double-talk.

What is needed at this point is a little humility from people who have got things wrong.



Notice that if it is truly impossible to separate the effect of the therapy per se from the effect of the therapeutic relationship then nobody can know that the therapy is any better than just the therapeutic relationship. So as far as we know it is useless!

 

I am glad you said it! It's extremely creepy (to put it mildly!). These justifications for what they are doing read like a pseudoscientific and sub-(?)fraudulent framework for coercion and abuse, and I really hope it can be exposed. Unfortunately I think some people understand this, but it's hard to get them to care or to think it's a problem worth doing anything about. I don't know how to do this.

The combination of an endorsement (tacit or overt) of coercive practices in general - usually cloaked in political language (with all this talk of "shared decision-making") - with obfuscation about the effect on outcomes of the "therapeutic relationship" is particularly dangerous and noxious. It's a mechanism for the transfer of even more power to the "therapists" and practitioners in such "relationships", which I am sure they must recognize and seek to promote further. There must be safeguards to protect patients against this power imbalance.

 

You know what they say, when reality conflicts with your model, stick to your model, put fingers in your ears and go LAH-LAH-LAH-LAH! The model is everything and reality is just a pale reflection of it. The ends justify the means, all the means.

Oh, wait, no, it's the exact opposite. Although there's something amazing that they think that most severe ME patients participate in support groups. They have no idea what severe ME is, or even bother checking their assumptions. Meaning they have absolutely no concept of the worst patients.

 

"Additionally, clinical experience has demonstrated the presence of anger in the patient group towards staff."

Why could that possibly be be I wonder ...

 

Like ... ensuring objective outcomes are specified and retained, in order to sort the wheat from the chaff? It is, I think, the non-pharmacological trials investigators who fall way short.

 

Sounds as if they must be some of those who are doing the treatment wrong. I seem to remember that all Simon Wessely's patients loved him to bits.

 

I've always wondered if they would throw specific colleagues under the bus with that line when pressed. The Dutch BPS mop has used the same line of unproper execution of the treatment. I always wondered what would happen if there was some sort of public discussion-platform and they were confronted with a bad experience like mine, if they'd throw that clinic under the bus, and if they would what that would do to the dynamic in their little niche-corner.

 

Yes. Also if you have an established diagnosis and a significant degree of impairment, possibly getting progressively worse it can be terrifying to hear worst case outcomes are real and not actually terribly unlikely.

Another difficulty is people with resources and sufficient care options preaching absolute rest excellent nutrition and private medical treatment to people who have no option at all to follow this path. People who will struggle to survive until total physical collapse and still be denied help.

 

Thank you for this @Hutan.

When I see such comments on severely affected patients being shared in writing publicly by a publicly funded body, the publicly funded healthcare body, I am in two places at once.

One. I feel sick.

Two. I feel relief.

Direct. Honest. Unabashed. Loud proud. Open. Straight forward contempt for their own patients and potential patients.

I am gratified to see that some are rather slow to recognise the utility of a good scrub, launder or relaunch.

 

Is there anyone else this could or should be reported to? What is the structure of responsibility/etc?

How do we stop people in general cleaning up their public materials whilst still carrying on with these attitudes and practices behind closed doors?

 

And another one for the file of so-called lessons learned from the AIDS crisis. We may be vindicated with time, but we will have been just as hated, if not more because it has lasted far longer. And that anger was explicitly and disgustingly used against us, just like it was. Zero lessons learned, not even one. If anything, they learned to be even more indifferent and hostile.

 

Just been looking through other CFS/ME CFS, clinics (am yet to find one that is ME/CFS) and a lot seem to be avoiding actually saying what they do with regards to treatment by saying
"using evidence based treatment programmes following NICE guidelines"
eg:
https://www.sussexcommunity.nhs.uk/...e-me-service-cfsme-service-sussex-wide/108935

they haven't bothered to even change the name and their links for further info are to AYME that no longer exists, and the Sussex and Kent ME society.

then we have this sort of thing
"Our team includes professionals with a variety of skills and is able to provide a number of treatment approaches. These include pacing and graded activity, occupational therapy, psychological therapy, psychiatry and physiotherapy."

Chronic Fatigue Syndrome Service (CFS) Humber
https://www.humber.nhs.uk/Services/chronic-fatigue-syndrome-service-cfs.htm

can't see much change yet.

 

From looking up the details for the replies I made on the Cochrane Review thread:

https://www.s4me.info/threads/indep...ed-by-hilda-bastian.13645/page-85#post-394030

my reading is that ME/CFS patients are parsed very strictly away from the CRESTA service and directed into the Psychology service set up. So I wouldn't see the CRESTA service as a way to give GET to ME/CFS patients, rather the opposite, it looks like CRESTA is ME/CFS adverse.

Under the NHS, POTS has a separate clinical pathway from ME/CFS, so again I wouldn't see the CRESTA clinic acquiring ME/CFS patients via a POTS diagnosis, excepting of course some patients may fall between two diagnostic stools, but that's always been the case.

Julia Newton currently has three distinct professional roles -

1. teaching and research https://www.ncl.ac.uk/civi/staff/profile/julianewton.html#teaching

2. Medical Director at AHSN NENC https://ahsn-nenc.org.uk/who-we-are/impact-brochure-2018/

3.her clinical practice at CRESTA - which I think is a one day week commitment

I couldn't see any evidence that Julia Newton has had any involvement in the Psych service at Newcastle - which operates at a different location to CRESTA. JL helped start up the CRESTA service in 2013 and was the clinical lead for several years but at some point she relinquished that role, and now just keeps her clinical hand in on limited basis. It's generally seen as desirable for academic clinicians to continue to see patients face to face even if only at a weekly clinic.