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Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME)

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user9876

Senior Member
Messages
4,556
trishrhymes said:
I notice the interviews were done when patients were still in treatment. So highly biased by loyalty to kind therapists and hope that the treatment might work. I'd much rather they did them a year later. Then we might get some useful insights.

I shall not read the full paper. Can't face it.
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Or with those who dropped out of treatment. Given the numbers interviewed then section will be a huge bias.

They talk about recruitment

Participants were recruited between July–September 2014. Patients who completed a course of treatment within this period were offered a Patient Information Sheet and ‘Consent to Contact’ Form by a clinician involved in their treatment. Interested patients were required to opt-in to the study by returning the Consent to Contact Form to the research team, after which the principal researcher contacted the patient by telephone to discuss the study in further detail. Participants were not eligible to participate in this study if they were: age < 18 years; too severely affected to be able to participate in interviews; unable to provide informed consent; unable to read and understand the Patient Information Sheet and Consent Forms; or not diagnosed with CFS/ME as a primary diagnosis.
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This sounds like they had the option to discuss opinions prior to selection and hence they could dissuade those who may have negative views. They don't say how many patients contacted them and were subsequently filtered at this phone interview,
 
Snow Leopard

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
This study is not useless, but it is important not to misintepret the results (despite the authors attempt to make you misinterpret the results with woolly statements eg "played a vital role in patients’ journeys towards an improved quality of life").

I would conduct such a study quite differently - eg prospective enrollment, mapping of human needs (and patient preferences) and then attempt to see if those needs/preferences had been met at the end. This study provides some detail as to the issues faced, that would aid in the design of a more substantial study.
 
Luther Blissett

Luther Blissett

Messages
724
Location
Yorkshire, England
I often wonder about the patients who don't even bother going in the first place.

If it's known that you will be 'encouraged' to do something like Gradual Exposure Therapy, (my new and more accurate description of GET) you run the risk of being 'non-compliant' which could be interpreted as 'resisting reasonable treatment' and cause all kind of trouble with the DWP.

As @Skippa also noted a high dropout rate, wouldn't an unbiased researcher want to know why there so many people who didn't feel it was 'a vital role in patients’ journeys towards an improved quality of life'?

How do you explain that apart from inventing a weird theory of perverse masochism?
 
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Sean

Senior Member
Messages
7,378
Snow Leopard said:
"played a vital role in patients’ journeys towards an improved quality of life"
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Fluff like this is always a warning bell.

Does seem like they are backing down from the claims of primary therapeutic benefit.


Luther Blissett said:
If it's known that you will be 'encouraged' to do something like Gradual Exposure Therapy, (my new and more accurate description of GET)
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Correctly so. GET is just an application of the general exposure-desensitisation model sometimes used in psych therapy.

Pity it is the wrong tool for this job.
 
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RogerBlack

Senior Member
Messages
902
A proper look needs to be taken at the paper, from the perspective of FOIA data that could be obtained to get more details of dropouts/... I diddn't get around to this yesterday, due to tidying the kitchen.
 
Lucibee

Lucibee

Messages
26
RogerBlack said:
A proper look needs to be taken at the paper, from the perspective of FOIA data that could be obtained to get more details of dropouts/... I diddn't get around to this yesterday, due to tidying the kitchen.
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I very much doubt they collected data on drop-outs so an FOIA request is unlikely to yield any results. I'd be more interested to know, of those who completed tx, how many were asked to join study, how many were phoned (screened?), was it the pt or the PI who determined at that point who would then take part, to get to the (only) 16 pts from 3 centres over 3 months who eventually took part.

And given there were only 16 interviews, why couldn't they make the full transcripts available as an appendix?

I found the quotes used quite interesting, but they did make it clear that they weren't asking for any comment on the treatment that pts had received. Reading between the lines, it says a lot about what they expect this sort of therapy to do for those who receive it (see particularly the section on Acceptance). "Recovery" = adaptation.
 
TiredSam

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Cheesus said:
A wide range of factors was evident in forming participants’ experiences, including personal characteristics such as perseverance and optimism
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That's where I stopped reading (must be my lack of perseverance). I can be quite grumpy so it wouldn't be any use for me. What have they got for grumpy people by the way? Does the NHS offer treatment for any other illnesses that only works for optimists? Sounds like blatent discrimination to me, curmudgeons have a right to get better too.

And if all they're now doing is talking about acceptance and management, instead of financing specialist services and "research" they could just direct sufferers to PR, where the quality of advice is vastly superior to what you'd get from an occupational therapist with a leaflet.

How did they objectively measure perseverance and optimism anyway? I suspect even someone with the perseverance to keep going through 30 years of disdain and the optimism to donate to the OMI and David Tuller could be found lacking by the BPS definition, by which just failing to improve gets you a tick in the "lacks perseverance and optimism" box.
 
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RogerBlack

Senior Member
Messages
902
Hutan

Hutan

Senior Member
Messages
1,099
Location
New Zealand
Yep, grumpy too.

RogerBlack said:
http://www-cdr.stanford.edu/intuition/Slough.html I am reminded of,
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(Excellent.

Veering off topic but I visited a relative of a relative in Slough on a very dreary overcast day in the 1990s. It left quite an impression on me; I was intrigued by how any possible pronunciation of the town's name still fitted it very well. I'm pretty sure we had lunch at a bogus-Tudor pub. I was surprised to read in this poem that such pubs were there annoying people in 1937.)
 
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Skippa

Skippa

Anti-BS
Messages
841
Right, I think I've still got my invitation for the study "proper" (I declined to partake in the formal interview stage) so that leaves 2 interesting options, either:

1) my comments somehow found their way into a pile of loosely coupled "patient responses"... (from another year)

Or (more likely)

2) other patients mirrored my thoughts exactly, thus showing how widespread the disdain really is (eg, it wasn't just me thinking that way!)

So now I'm thinking, if my dates are wrong, these patient responses are gathered regularly, and maybe poor ones are binned, and when some "slightly favourable" reponses are collected from the same group, they get published like this... all mere speculation on my part I guess.

(Side note: for anyone who's interested, you get pages and pages of hand outs each week, and "homework" and a good deal of them had PACE in the footer (copyright notice). Oh how us lazy f£&£cks enjoyed reading about The Deconditioning Model of CFS)
 
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Somer

Messages
55
boombachi said:
We did not seek to explore patients’ experiences of specific treatments or components of treatment programmes such as CBT and GET.

It seemed mostly focussed on patients feeling validated and emotional support to accept being chronically ill rather than improving functionality.

The other principal limitation of our study is that we recruited patients who had reached the end of treatment. This means that the positive experiences that we have reported could be considered to represent ‘success stories’. We do not have figures for drop-out rates, which might reflect dissatisfaction with services and/or competing health issues. We would propose interviews with patients who do not complete treatment as an important area for future qualitative research. Our findings are susceptible to selection bias if patients were motivated to participate by a sense of gratitude and an altruistic desire to ‘give back’ to the clinic after a positive experience.

Good point!

The study seems to pick out what patients value about specialist services. I.e. understanding of the condition, validation, empathy. It makes the point at the end that these are all things that should be reasonably expected in primary care but are lacking due to current attitudes.

I only read the results and discussion. I think they were realistic about the limitations of the study. Best evidence I have seen yet for redirecting the resources for these clinics into GP training. If GPs could validate and be empathic and a practice nurse give information and advice like they do other chronic conditions that would serve the same purpose as far as I am concerned.
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Exactly! & the same for children's services which would invalidate the need for specialist centres. Specialist centres are seen as helpful because of the poor treatment (possibly an understatement) that many families have received from schools & GPs. I think specialist services could be useful if they acted as some kind of training hub where they
provided outreach education & development training for primary health care & for education providers. The problem is that the current 'education' would still be along GET/CBT lines. They could also be doing valuable signposting to charities & patient forums. The trouble again though is that the Bath service seems to have no time for the Tymes Trust (which has done so much invaluable work protecting families) & has little time for forums (where there is a huge wealth of knowledge). You have to live the illness, or live with it, to fully grasp its complexity & it takes a rare person to be able to do that without that exposure.
 
TiredSam

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
RogerBlack said:
Grumpy rhymes are rhymes too!

http://www-cdr.stanford.edu/intuition/Slough.html I am reminded of, and have just discovered http://famouspoetsandpoems.com/poets/john_betjeman/poems/785 - which I quite like.
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And get that man with double chin
Who'll always cheat and always win,
Who washes his repulsive skin
In women's tears:
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Sound like anyone we know?

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