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

dave30th said:
I think a qualitative study of people's accounts on this would definitely make a good paper.
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Would @Graham @Tom Kindlon et al be interested as a follow up to their paper?

The satellite clinic (of a CFS/ME clinic in neighbouring County) available in a city (10 miles each way, commuter traffic) either provides:
group sessions - 2 hours long, every 2 weeks, for 5-6 weeks; or
one-to-one sessions - up to an hour, for 6 appointments (mine were extended to 8 as I was still attending Occupational Health procedures prior to dismissal from my career). Closely spaced initially, then 4-6 weekly.

The supportive letters from the Clinic & the kindness of the Clinician were excellent. However, I had already “recovered” from PVFS once before and knew enough to ‘do my own thing’ and not follow instructions blindly. Just the drive to attend the appointments (after the first few which husband drove me to, but he had to take leave from work) was far too much for me really.

Some sort of decent CBT, counselling, access to support with employer/college/school/DWP, is still very much needed everywhere. Perhaps clinics could even offer alternative therapies, even gentle massage/access to warm swimming pools/well being, similar to the Maggie Clinics for Cancer. But we would still have the problems of getting ourselves to any clinic and the subsequent payback.

However, in the U.K. (where they are available), the Clinic discharges you, back to GP and, in effect, no other care.
They should not make any sweeping statements about patients having ‘recovered’, we are left to manage as best as we can. In reality, we are just abandoned.
We are not back at work or even managing to run our homes without significant help from partners or family.
 
It's M.E. Linda said:
But we would still have the problems of getting ourselves to any clinic and the subsequent payback.
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It amazes me that clinics don't seem to think enough about this problem.

As far as a "follow-up" is concerned, the problem is that there are lots of accounts from all sorts of people about their experiences, and it would be easy enough to collect more. But any collection is not going to be random, so any account can be dismissed as biased.
 
Graham said:
It amazes me that clinics don't seem to think enough about this problem.

As far as a "follow-up" is concerned, the problem is that there are lots of accounts from all sorts of people about their experiences, and it would be easy enough to collect more. But any collection is not going to be random, so any account can be dismissed as biased.
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Trouble is they are convinced the problem is with the patient and not themselves, which heavily biases them into believing there is nothing they need to do, and effectively blocks them from seeing there is anything they need to do. From their perspective it is a self-fulfilling, perfect comfort zone.
 
If pwME as recipients of "care" in these clinics report harms, this may be seen as the patient's imaginings, or faulty illness/harm beliefs. It could be concluded the patient was cured of ME, but now has the faulty belief they were harmed in the process. Therefore, they are still showings signs of some sort of psychological condition.

Maybe they'll start clinics to deal with pwME who say they've been harmed by GET/CBT. :wtf::banghead::mad:
 
Eagles said:
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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A few tweets with short extracts:


 
DokaGirl said:
@rvallee - are there studies comparing different countries' "therapies" and lack of for ME?
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I don't think so. But simply taking the example of Australia and the UK, having implemented guidelines based on the psychosocial model for 17 and 12 years respectively without showing any significant improvement makes that point. We just don't have enough good quality data to make a direct comparison. Especially since the UK hasn't updated its numbers in, what, decades?

Both the US and the Australia are now on track to make a population and economic impact study so that would be a good start. The US never actually did go beyond just suggesting the CBT/GET paradigm and didn't really implement it in a systemic fashion, which Australia did. Hopefully a direct comparison is made, I'm just not sure who would fund it. Crazy to think how much progress we could make if patient representatives could actually direct some research budgets. We'd be so much farther, no doubt about that.
 
@rvallee

Thanks, I thought I'd missed a comparison study. Would be interesting to see. Of course many Canadian physicians follow the CDC advice. I recall one or two Canadian websites I've seen did recommend GET and CBT. Like the States though, this was never implemented.
 
Graham said:
But any collection is not going to be random, so any account can be dismissed as biased.
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This is true of course. But a well-written account of, say, 20 or however many clinic patients interviewed or questioned in a systematic way would be a contribution to the literature. Even if if were randomized, they would find a way to criticize it. Qualitative research can't be used to make generalizations, but it can present an in-depth account of the experiences of those interviewed, which has a value of its own.
 
dave30th said:
This is true of course. But a well-written account of, say, 20 or however many clinic patients interviewed or questioned in a systematic way would be a contribution to the literature. Even if if were randomized, they would find a way to criticize it. Qualitative research can't be used to make generalizations, but it can present an in-depth account of the experiences of those interviewed, which has a value of its own.
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Agreed. I think I was looking at it more from the kind of reaction we would get if we did it. If we could get someone more detached from the debate to carry out those interviews, they would carry more clout. If I did it, it would sink without trace.
 
Graham said:
Agreed. I think I was looking at it more from the kind of reaction we would get if we did it. If we could get someone more detached from the debate to carry out those interviews, they would carry more clout. If I did it, it would sink without trace.
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Perhaps @PhysiosforME would be interested in this. Not exactly detached, but if looking to understand and reframe support it might be a worthwhile exercise.
You have to both know and understand what doesn't t work and why before you can offer anything effective

Note the ecent paediatric qualitative study into PEM. Whilst there remains the issue of describing and understanding what constitutes PEM, this was worthwhile in that it provided insight from children/ adolescents and their parents in their own words( not just questionnaire boxes) and gave a rare voice for those who are usually represented by numerical ranges.

It also showed how much the service providers do not understand by those responses. ,eg a child whose experience of PEM is limited to an exacerbation in solely fatigue is a child who in my opinion does not have ME , and could therefore potentially benefit from further exploration and alternative treatment pathways .....
 
dave30th said:
This is true of course. But a well-written account of, say, 20 or however many clinic patients interviewed or questioned in a systematic way would be a contribution to the literature. Even if if were randomized, they would find a way to criticize it. Qualitative research can't be used to make generalizations, but it can present an in-depth account of the experiences of those interviewed, which has a value of its own.
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I think it could be of value along with a more detailed look at processes and how they should work. Ideally interviews with people working in a variety of clinics around how they would capture and report treatment deteriation and harm.
 
not about harms but related to 'monitoring' of IAPT clinics (from CBTwatch)

The IAPT Manual published last year recommends extension of the service to irritable bowel syndrome, chronic fatigue syndrome, chronic pain and medically unexplained symptoms not otherwise specified but makes no mention at all of the need for independent blind assessment of outcome, instead it suggests simply what self-report measures should be administered. See link below:

https://www.dropbox.com/s/pgmbsoqjqmq04qz/IAPT Manual 2018.pdf?dl=0
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Yet another marketing opportunity, when we need real world answers, how many people said to an impartial observer that they were back to their usual selves after the intervention? how long did this last?
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http://www.cbtwatch.com/
 
Amw66 said:
Perhaps @PhysiosforME would be interested in this. Not exactly detached, but if looking to understand and reframe support it might be a worthwhile exercise.
You have to both know and understand what doesn't t work and why before you can offer anything effective

Note the ecent paediatric qualitative study into PEM. Whilst there remains the issue of describing and understanding what constitutes PEM, this was worthwhile in that it provided insight from children/ adolescents and their parents in their own words( not just questionnaire boxes) and gave a rare voice for those who are usually represented by numerical ranges.

It also showed how much the service providers do not understand by those responses. ,eg a child whose experience of PEM is limited to an exacerbation in solely fatigue is a child who in my opinion does not have ME , and could therefore potentially benefit from further exploration and alternative treatment pathways .....
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Thank you for this suggestion - I like the idea of looking to understand and reframe support. We are starting to think about how best to challenge some of the thinking in our profession - how to work with existing centres is something we are really conscious of and are trying to work through how we can best do this. Our survey on the ME Association page has given us a platform to build on so I will add this into our discussions. We have collected a lot of feedback from Twitter and Facebook that could also be a good way to build on this with a more robust piece of research.
 
Tom Kindlon said:



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Inevitably some people will ask why there was no monitoring of outcomes for COVID-19 patients experiencing significant relapses because of misguided advice at the various services they will be subjected to.

The simple answer will be that no one monitored anything and it was all on purpose to hide the massive failure. The same with IAPT, where many of them will be sent to, with no more monitoring of outcomes, adverse or otherwise. Because it's all a giant scam. All of it.
 
Andy said:
Paywall, https://journals.sagepub.com/doi/10.1177/1359105319854532
Sci Hub, https://sci-hub.se/10.1177/1359105319854532

Many thanks to the authors, @Graham , @Tom Kindlon , @Brian Hughes
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I searched but I couldn't find a legal copy online that others can access so I have uploaded here https://www.researchgate.net/public..._Health_Service_specialist_centres_in_England what we submitted to the journal which is something we own the copyright on. (Somebody had just emailed me for a copy)
 
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