Specialist treatment of CFS/ME: a cohort study among adult patients in England, 2017, Collin and Crawley

Hutan

Hutan

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Abstract
Background
NHS specialist chronic fatigue syndrome (CFS/ME) services in England treat approximately 8000 adult patients each year. Variation in therapy programmes and treatment outcomes across services has not been described.

Methods
We described treatments provided by 11 CFS/ME specialist services and we measured changes in patient-reported fatigue (Chalder, Checklist Individual Strength), function (SF-36 physical subscale, Work & Social Adjustment Scale), anxiety and depression (Hospital Anxiety & Depression Scale), pain (visual analogue rating), sleep (Epworth, Jenkins), and overall health (Clinical Global Impression) 1 year after the start of treatment, plus questions about impact of CFS/ME on employment, education/training and domestic tasks/unpaid work. A subset of these outcome measures was collected from former patients 2–5 years after assessment at 7 of the 11 specialist services.

Results
Baseline data at clinical assessment were available for 952 patients, of whom 440 (46.2%) provided 1-year follow-up data. Treatment data were available for 435/440 (98.9%) of these patients, of whom 175 (40.2%) had been discharged at time of follow-up. Therapy programmes varied substantially in mode of delivery (individual or group) and number of sessions. Overall change in health 1 year after first attending specialist services was ‘very much’ or ‘much better’ for 27.5% (115/418) of patients, ‘a little better’ for 36.6% (153/418), ‘no change’ for 15.8% (66/418), ‘a little worse’ for 12.2% (51/418), and ‘worse’ or ‘very much worse’ for 7.9% (33/418).

Among former patients who provided 2- to 5-year follow-up (30.4% (385/1265)), these proportions were 30.4% (117/385), 27.5% (106/385), 11.4% (44/385), 13.5% (52/385), and 17.1% (66/385), respectively. 85.4% (327/383) of former patients responded “Yes” to “Do you think that you are still suffering from CFS/ME?” 8.9% (34/383) were “Uncertain”, and 5.7% (22/383) responded “No”.

Conclusions
This multi-centre NHS study has shown that, although one third of patients reported substantial overall improvement in their health, CFS/ME is a long term condition that persists for the majority of adult patients even after receiving specialist treatment.

https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2437-3#Fig3
Open access
 
Hutan said:
Among former patients who provided 2- to 5-year follow-up (30.4% (385/1265)), these proportions were 30.4% (117/385), 27.5% (106/385), 11.4% (44/385), 13.5% (52/385), and 17.1% (66/385), respectively. 85.4% (327/383) of former patients responded “Yes” to “Do you think that you are still suffering from CFS/ME?” 8.9% (34/383) were “Uncertain”, and 5.7% (22/383) responded “No”.
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Only 30% of former patients provided followup data in the 2 to 5 year period.
Of that 30%, 85% said yes, they were still suffering from ME/CFS and another 9% weren't sure. Only 5.7% said 'no, I'm not still suffering from ME/CFS'.

I would have expected a much higher recovery rate just from natural improvement of a group of people diagnosed with ME/CFS, some of whom may have had other conditions. And that's before subjecting them to brainwashing about a psychosomatic cause i.e. 'it's only your thinking that is stopping you get better' and increasing the stigma of having an ME/CFS diagnosis.
 
Hutan said:
CFS/ME is a long term condition that persists for the majority of adult patients even after receiving specialist treatment.
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That's the exact opposite of what they've been selling and marketing for years. Good to see they had the sense to admit this one lapse but it hasn't changed anything in their work or messaging since so what the hell does that say about the whole thing? That they keep debunking their own assumptions and never cease to promote them, unchanged from their early days, themselves largely unchanged from their origins over a century ago.

It's not as if this "specialist treatment" is specialist in ME so I don't know the point of pretending other than for purely marketing purposes. These people are absolutely not specialists in ME and have never bothered to learn the basics.
Conversely, at their initial assessment patients with follow-up were more likely to have been on sick leave (19.0% (74/389) vs 12.8% (56/438), p = 0.01) and had shorter working hours per week (21 (8–35) vs 25 (10–37) hours, p = 0.06). There were no differences between responders and non-responders in any other characteristics or measures.
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This is clearly not a valid ME cohort if only 19% were on sick leave. Or this is a strictly mild cohort anyway, an unrepresentative sample.
Overall, 18% (71/394) of patients reported returning to work or increasing working hours since first attending a specialist service, whilst 30% (118/394) reported having ceased working or reduced hours because of CFS/ME and 47% (186/394) reported no change (Table 3).
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I would assume most of that 18% of "returned to work or increased hours" were "increased hours". Why they would pool them together obviously reeks of burying relevant data. So basically nearly twice as many worked less or stopped working than those who worked more or resumed working. And this is here is on actual objective data, not some completely invalid "returned to normal by meeting the functional threshold of an average 80 year-old".
Increased ability to perform unpaid work and domestic tasks was reported by 35% (129/372) of patients, reduced ability by 34% (127/372), and no change by 29% (109/372). Similarly, 35% (139/397) of patients reported being able to do more social and leisure activities, 36% (143/397) reported being less able, and 26% (102/397) reported no change. Only 5% (11/240) reported returning to, or increasing hours of education/training, whilst 13% (31/240) ceased or reduced their hours and 79% (189/240) reported no change.
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This would appear to be consistent with fewer people working or working less, and thus having some limited ability to expand that energy. Basically it shows that removing the work requirement from chronically ill patient increases their quality of life. Who knew?! Besides literally everyone.

But in an Orwellian twist, evidence does not actually matter in evidence-based medicine. Despite the rosy baseless claims about vague generic improvements on arbitrary questionnaire scores, this debunks everything these people have been selling for decades. And it won't even matter, they will keep making the same claims they have been making baselessly.

And even though this is an unrepresentative sample, the 5% rate of "recovery" is still there with a clearly mild cohort. Basically playing on easy mode with cheat codes and still losing.

Interesting, @dave30th.
 
"CFS/ME is a long term condition that persists for the majority of adult patients even after receiving specialist treatment."
rvallee said:
That's the exact opposite of what they've been selling and marketing for years.
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Exactly. My first thought when I read that is that they finally seem to be tacitly conceding their findings over the years have been grossly over-hyped. Worried they may not be so convincing after all.
 
Barry said:
"CFS/ME is a long term condition that persists for the majority of adult patients even after receiving specialist treatment."


Exactly. My first thought when I read that is that they finally seem to be tacitly conceding their findings over the years have been grossly over-hyped. Worried they may not be so convincing after all.
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Given the degree of attention such research is being given due to long COVID a tactical retreat ?
Let's a research focus move whilst retaining status ...
 
rvallee said:
Hmmm... should probably merge the threads? It's hard to keep track of things with brain fog but even more so with so many papers that are almost identical to one another.
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Just to clarify, this thread is about a 2017 paper evaluating outcomes in nearly 1000 patients in NHS CFS clinics.
Tom Kindlon referenced the paper when responding to recent claims by Alastair Miller about the efficacy of the clinics.
 
Hutan said:
and 5.7% (22/383) responded “No”.
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Maybe these were people who didn't have ME to begin with, and found a different diagnosis. I also wonder what the results would be from people who would have fit the criteria for the study, but didn't get the 'specialized treatments'. I'm sure some would also have improved. Also, did the people who did get the treatments not do any self-treatments that might have affected their severity? Sounds like a pretty meaningless study, at least from the perspective of people who really do have ME. Bureaucrats might love it, since they can probably find something in it to justify whatever they like.
 
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