Monitoring treatment harm in [ME/CFS]: A freedom-of-information study of National Health Service specialist, 2019, McPhee et al

All this "outsourcing" is worrying - and maybe eyeopening. In short the BPS people have devised a vague treatment based on very little observation, never mind evidence which consists of telling the patient to increase exercise. It only works if it is done by an accredited therapist and if it does not work it is the patient's fault.

Now companies are being set up to give this treatment.

It is like those churches in America where you are cured if you believe, especially if you give enough money to show the strength of your belief. if it does not work your belief (in monetary terms) was not adequate.
 
Michiel Tack said:
So I assume they acknowledge gradually increasing your exercise level can cause symptom flares or 'setbacks', but that it's seen as a normal part of getting fitter and stronger. The GETSET manual literally said: "Setbacks are a normal part of recovery"
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That recent, awful account of the boy that sacrificed almost his entire cognitive/speech/mental abilities whilst undergoing GET is a terrifying continuation of this sort of twisted attitude. It doesn't bear thinking about that there are people who will be OK with this approach. I know they are saying it because they deny any role of PEM, but that case showed how far they are willing to push it.
 
I think there are at least a couple or more reasons for the vagueness of patient instruction booklets: writers/clinics/therapists can deny the pwME understanding of the booklet if something goes wrong, that way there is less potential for law suits, and the clinics et al. don't know what they're talking about (which is patently obvious!)
 
Tom Kindlon said:
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So now that it has been confirmed that the local services do not perform even the most basic monitoring... what happens? This answer is clearly inadequate, deceitful in fact. There is no assessment of efficacy or safety by anyone. Nothing is actually being recorded as all the cases are treated as "individualized plans" for which no aggregate data is tallied.

Decade-old controversial research is not relevant after 12 years of implementation when no monitoring or assessment of those services is made by anyone. Which itself is very odd as some agency somewhere funds services without being bothered to check if the funds are properly used.

The only significant monitoring that NICE could be credited for having done is the survey that showed over 50% of respondents were harmed by GET and that CBT is useless at best. This is the only actual assessment of efficacy and safety and it clearly shows massive failure.

But as always, could have just replied: "whatever, don't care".
 
The lack of monitoring by all concerned is shocking. How do the clinics justify continued receipt of tax payers' funding? Do they have to justify anything? Is this how all health services operate?

How does the NHS monitor other services? How does it decide what surgeries, drugs, therapies etc., are harmful, useless etc.? Presumably there is accountability in other services. Perhaps the ME clinics just report - "All fine here - all recovered, after our very effective GET and CBT". If that's the case, it's appalling.
 
rvallee said:
So now that it has been confirmed that the local services do not perform even the most basic monitoring... what happens? This answer is clearly inadequate, deceitful in fact. There is no assessment of efficacy or safety by anyone. Nothing is actually being recorded as all the cases are treated as "individualized plans" for which no aggregate data is tallied.

Decade-old controversial research is not relevant after 12 years of implementation when no monitoring or assessment of those services is made by anyone. Which itself is very odd as some agency somewhere funds services without being bothered to check if the funds are properly used.

The only significant monitoring that NICE could be credited for having done is the survey that showed over 50% of respondents were harmed by GET and that CBT is useless at best. This is the only actual assessment of efficacy and safety and it clearly shows massive failure.

But as always, could have just replied: "whatever, don't care".
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One Carol Monaghan and fellow MPs could take forward with department of Health.
 
NelliePledge said:
One Carol Monaghan and fellow MPs could take forward with department of Health.
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That would be great. Is contact with Monaghan mostly ad hoc or does someone have a continued relationship with her and/of her office?

Normally the opposition/shadow minister of health should also have some interest in this. It's clear misuse of public funds and blatantly unethical to dispense health services in complete indifference to outcome. UK politics are a mess right now but it could be useful to bring attention to the shadow health minister for that. I just don't know who has the resources for that but it won't happen spontaneously.
 
Good idea @rvallee for someone, probably in the UK to contact the shadow Health Minister(s). That way, if they make an announcement the Government may be obliged to explain.

Same thing with taxpayers' associations. We see their articles here about government overspending, and waste.

Background information would probably need to be provided for taxpayers' associations, and they would need to be onside about especially GET having the potential to harm pwME. Not an easy task for pwME.
 
Nothing much is happening in UK Parliament at the moment, it's all Brexit and waiting for new Tory leader to be chosen who will be PM. Plus they're about to go off on their summer hols even though leaving the country in crisis.

I think Carol Monaghan's constituents are in touch with her, and UK charities too.

Basically you can only write to your own MP about problems. They can get in touch with whichever Minister might be involved if they think that's the way to go. It's not etiquette to write to other MPs. Understandable, as MPs are paid to represent their constituents (whether they voted for them or not).

I would encourage people to contact their MPs, as they can be very helpful. Mine was very helpful when I had problems with my PIP application and complained about ATOS (as it was then). She is a very hard working MP, and is good at giving follow up - I've contacted her about a number of things.

Unfortunately not all MPs can be bothered about even just replying to, let alone doing anything for, their constituents. At least that's the impression I've had over years.
 
Yes @ladycatlover. Your understanding, as well as impression of how it goes with MPs applies in Canada too. One's own MP is responsible for their own constituents. Party and committee leaders in Canada may reply to people other than their own constituents. As well, Ministers do too.

However, as you say not all MPs reply to their own constituents, nor provide any meaningful help.
 
In the last few years, the Journal of Health Psychology has provided a valuable platform for researchers, academics, and other experts who have challenged the claims made in the discredited PACE trial and other research from the CBT/GET ideological brigades. Last month, the journal published a revealing and useful paper from four authors–three smart members of the patient/advocacy community, along with an academic psychologist.

The paper is called “Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England.” It documents serious limitations in how or even whether NHS specialist services educate patients about about potential treatment harms and how or whether these services monitor such harms.

I asked the lead author–Graham McPhee–for a description of what he and his co-authors did and why they did it and what they found. (His co-authors are Adrian Baldwin, Tom Kindlon, and psychology professor Brian Hughes.) He sent me the following on behalf of the entire group.
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http://www.virology.ws/2019/07/16/t...s-clinics-lax-on-treatment-harms-study-finds/
 
Merged thread

Trial By Error: NHS ME/CFS Clinics Lax on Treatment Harms, Study Finds

http://www.virology.ws/2019/07/16/t...s-clinics-lax-on-treatment-harms-study-finds/

16 July 2019

By David Tuller, DrPH

In the last few years, the Journal of Health Psychology has provided a valuable platform for researchers, academics, and other experts who have challenged the claims made in the discredited PACE trial and other research from the CBT/GET ideological brigades. Last month, the journal published a revealing and useful paper from four authors–three smart members of the patient/advocacy community, along with an academic psychologist…
 
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Reckless is probably more apt than lax. Whatever the circumstances and beliefs, to simply not perform even the most basic monitoring, quality control, evaluation of efficacy and safety checks on medical treatments is simply unacceptable. It doesn't matter that people involved simply use the credibility and legitimacy of medicine simply to promote a psychological ideology, deceitful intent should not grant exemptions and allow for absolutely no accountability, quite the opposite, in fact.

By using medicine to bolster the credibility, a treatment model has to rely on the rules and obligations that govern medicine. Either they drop the pretense and commit to the pseudoscience or conform to the ethical and professional obligations of medicine, which has unique and exceptional exemptions that cannot be "borrowed" for other purposes. Eating their cake and having it, too.
 
Adrian said:
If people have experience of reporting harm and deterioration to UK clinics it would be interesting for us to have a record of their experiences.
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Particularly given the growing body of evidence that shows a massive gulf between the perception and claims of its promoters with patient surveys and research that still find ME at the very bottom of the quality of life index, with no difference between countries that adopted the CBT/GET paradigm and those that simply choose to do nothing. This is consistently found and validated in every study that includes patient testimony: two completely distinct realities, one of success, by people with no personal stake or insight in the matter other than their career, and another of massive systemic failure, reported by the "beneficiaries" of the model.

If this were a drug, where research and clinical trials showed massive (subjective) success while patient testimony consistently showed harm, deterioration or, at best, no effect at all, there would be serious issues raised, investigations and eventual prosecution. Here it's only accepted because it's been normalized that our testimony is assumed to be worthless, without evidence and on the mere say-so of a few people. Even though there is no basis for this denial of agency, it's just implied.
 
@rvallee - are there studies comparing different countries' "therapies" and lack of for ME?

Agree, your comments about psychobabble "treatments" hiding behind the credibility of medicine. However, medicine misses reporting on harms too. For example the CBC program on a birth control product called Essure, that has harmed many, many women - Health Canada reported one instance of harm.


I also like the comment on @dave30th's blog, by someone who wrote in about pwME being treated like chewing gum on a movie theatre floor - true, very true.

And, another comment by someone who wrote in on @dave30th's blog: appalling thought but quite possibly true, that some of the personnel chosen for these clinics were picked partly due to their ability to ignore harms.....
 
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