• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England

Dolphin

Senior Member
Messages
17,567
Among other things, this shows that "much better" is a much worse result than "very much better". In the PACE trial, "very much better" was required for recovery in the PACE trial protocol. However by the time the recovery paper was published, "much better" was also sufficient.

Figure S1. Changes (mean difference with 95% CI) in patient reported measures between initial assessment and 1-year follow-up by overall improvement in health among patients treated by CFS/ME specialist services. (TIFF 12271 kb)
12913_2017_2437_MOESM2_ESM.png
 

Dolphin

Senior Member
Messages
17,567
Of the 1067 newly referred patients recruited by the 11 services during the study period, 952 (89.2%) had baseline data and were available for follow-up (Fig. 1). Of these patients, 771 (81.0%) were female, the median (IQR) age was 41 (30–50) years, and patients had been ill for 36 (15–84) months.
Gives an idea of who are seen at clinics.

I would prefer if they also asked how long people had been diagnosed. I think a lot of people would see some sort of improvement in the period after they get diagnosed which allows more stabilisation than if you are not diagnosed.

Study population 7901 patients had a new CFS/ME diagnosis recorded during the study period. Matched controls were available for 7626 (96.5%) of these patients. The population comprised 916 child (age <18 years) and 6710 adult patients. At the time of the index event, the median (interquartile range (IQR)) age of child patients was 15 (13–16) years, and 63.9% (585/916) were female; the median (IQR) age of adult patients was 43 (33–53) years, and 72.6% (4874/ 6710) were female.

BMC Fam Pract. 2017 May 5;18(1):60. doi: 10.1186/s12875-017-0635-z.
Health care resource use by patients before and after a diagnosis of chronic fatigue syndrome(CFS/ME): a clinical practice research datalink study.
Collin SM1, Bakken IJ2, Nazareth I3, Crawley E4, White PD5.
The proportion of men in those who attend clinics (19%) is smaller than that of those who are getting diagnosed in the UK (27.4%).
 

Dolphin

Senior Member
Messages
17,567
Information on people for whom they had outcome data compared to those who did not respond to a request for data:
Follow-up data were available for 440/ 952 (46.2%) of patients, after an interval of 14.0 (12.5– 16.7) months. Patients who responded tended to be older (42 (32–51) vs 39 (29–49) years, p = 0.003) and to have a shorter self-reported duration of illness (26 (12–80) vs 36 (18–84) months, p = 0.02) (Additional file 1: Table S1).

Common CFS/ME-related comorbidities tended to occur less frequently among responders vs non-responders: migraine
(20.1% (84/417) vs 26.6% (128/482), p = 0.02), depression (28.3% (115/406) vs 41.0% (194/473), p < 0.001), and anxiety (32.4% (132/407) vs 48.1% (229/476), p < 0.001).

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.
 

Dolphin

Senior Member
Messages
17,567
These would include people who gave up on therapy.
Also 59.8% had "not yet completed treatment or had an open appointment future follow-up appointment" so likely had more appointments in total.

12913_2017_2437_Fig2_HTML.gif


It looks like often people get more sessions than NICE have budgeted for:

3.2.7 The cost of individual CBT is based on nine 1-hour sessions delivered by a clinical psychologist (a midpoint of the 6 to 12 sessions that have been offered in randomised controlled trials). This equates to £678 per patient.

3.2.8 The cost of group CBT is based on eight, 2-hour sessions for eight patients with a clinical psychologist (based on a randomised controlled trial). This equates to £150 per patient.

3.2.9 The cost of GET is based on similar individual and group formats, delivered by physiotherapists (based on randomised controlled trials). This equates to £380 per patient for individual GET and £85 for group GET.

I think this can get forgotten when comparisons are made between nonpharmacological and pharmacological treatments for ME/CFS. The nonpharmacological treatments can cost more in practice than what people say they cost in cost estimates.
 
Last edited:

Dolphin

Senior Member
Messages
17,567
I think this can get forgotten when comparisons are made between nonpharmacological and pharmacological treatments for ME/CFS. The nonpharmacological treatments can cost more in practice than what people say they cost in cost estimates.

http://journals.plos.org/plosone/ar...notation/a8885639-df48-41bd-8dd9-2dcfad623fb6

CBT costs £176/session at Maudsley Hospital (one of trial centres). This translates to CBT not being cost effective when a QALY is valued at £30,000 in healthcare costs

Posted by tkindlon on 23 Feb 2014 at 02:37 GMT

This paper (1) says:
"The cost per hour of therapy was £110 for CBT and £100 for APT and GET"
and
"The healthcare costs per QALY gained for CBT and GET compared to SMC were below the cost-effectiveness threshold of £30,000. The cost of CBT would need to increase by 45% and GET by 22% for the cost per QALY to reach £30,000."

That is to say, the threshold for CBT to be cost-effective is £159.50 per hour of therapy.

As Ed Jackson has pointed out (2), the actual cost being charged at Maudsley Hospital, London (one of the centres for the CBT Trial itself) is £176 per session (pp.41, 3). In the PACE Trial, there was one session of 90 minutes and the other 14 sessions were of 50 minutes (4). This translates to average session length of 52.67 minutes if all the sessions are attended, slightly more if not all the sessions are attended. The £176 per session at Maudsley Hospital is quoted for 20 sessions. If all the sessions are attended, this would mean an average session length of 52 minutes. If fewer were attended, it would be slightly more. If one uses the figure of 52 minutes, that translates to CBT costing £203.08 per hour, a lot more than the threshold for CBT to be cost effective where a QALY is valued at £30,000. If one uses a more conservative figure of a session lasting 60 minutes on average, then it costs £176 per hour and is still not cost effective.

I thought I would highlight again an analysis promised in the statistical plan (5): "The estimated costs of APT, GET and CBT will be increased and decreased by 50% to see how sensitive the costs, cost-effectiveness and cost-utility findings are to these variables." Increasing the cost by 50% using such a sensitivity analysis, which wasn't explicitly reported in the cost effectiveness paper itself, CBT would not be cost effective. Such an analysis seems particularly relevant given the quoted cost of CBT in Maudsley Hospital.

References:

1. McCrone P1, Sharpe M, Chalder T, Knapp M, Johnson AL, Goldsmith KA, White PD. Adaptive pacing, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome: a cost-effectiveness analysis. PLoS One. 2012;7(8):e40808. doi: 10.1371/journal.pone.0040808. Epub 2012 Aug 1.

2. Jackson Ed: Additional analyses from statistical analysis plan and trial's protocol should also be released.
http://www.plosone.org/an...

3. National Services Directory. A guide to our specialist mental health services for adults across the United Kingdom. April 2012 - March 2013 https://www.national.slam...

4. Burgess M, Chalder T. PACE manual for therapists. Cognitive behaviour therapy for CFS/ME. http://www.pacetrial.org/... .

5. Walwyn R, Potts L, McCrone P, Johnson AL, DeCesare JC, Baber H, Goldsmith K, Sharpe M, Chalder T, White PD. A randomised trial of adaptive pacing therapy, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome (PACE): statistical analysis plan. Trials. 2013 Nov 13;14:386. doi: 10.1186/1745-6215-14-386
 

Dolphin

Senior Member
Messages
17,567
I think this can get forgotten when comparisons are made between nonpharmacological and pharmacological treatments for ME/CFS. The nonpharmacological treatments can cost more in practice than what people say they cost in cost estimates.
http://journals.plos.org/plosone/ar...notation/e7f35e14-c148-46b1-b84e-17a08abb4b1b

GET costs more at Saint Bartholomew's Hospital (Barts) (one of the trial centre) than the estimate, meaning therapy there is not cost effective when a QALY is valued at £30,000 in healthcare costs

Posted by tkindlon on 24 Feb 2014 at 20:47 GMT


I previously pointed out that the real cost of CBT at Maudsley Hospital (one of trial centres) is a lot more than the estimated cost, meaning that CBT at Maudsley Hospital is not cost effective at a threshold for healthcare costs of £30,000 per QALY (1).

I also have some data on the cost of GET, although it is not in the exact same form.

McCrone et al. (2) used the following estimate: "The cost per hour of therapy was £110 for CBT and £100 for APT and GET".

They also said: "The healthcare costs per QALY gained for CBT and GET compared to SMC were below the cost-effectiveness threshold of £30,000. The cost of CBT would need to increase by 45% and GET by 22% for the cost per QALY to reach £30,000."

That is to say, £122 per hour of GET is the threshold for GET to be cost effective using a threshold of £30000 in healthcare costs per QALY.

The following is information on the costs of attending Saint Bartholomew's Hospital (Barts) from 2009: The initial consultation is free and if diagnosis is confirmed, 16 sessions are offered at a cost of £4,228. If the patient has not responded, one can keep going at no additional cost.

In the PACE Trial, which was conducted at the same venue, the first session was 90 minutes with subsequent sessions being 50 minutes long (therapist manual). That £100 an hour, that is a cost of £1316.67.

If a 16th session was added, that would be 14 hours, which translates to £1400 at £100 per hour.

I am not sure what the cost of an initial assessment would be but the PACE Trial estimated it at £169 per hour.

These figures clearly suggest that GET at Barts actually costs a lot more than the estimate of £100 per hour and, more importantly, more than £122 per hour, the cost above which treatment is no longer cost effective using a threshold of £30,000 for healthcare costs per QALY.

References:

1. Tpkindlon. "CBT costs £176/session at Maudsley Hospital (one of trial centres). This translates to CBT not being cost effective when a QALY is valued at £30,000 in healthcare costs" http://www.plosone.org/an...

2. McCrone P, Sharpe M, Chalder T, Knapp M, Johnson AL, Goldsmith KA, White PD. Adaptive pacing, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome: a cost-effectiveness analysis. PLoS One. 2012;7(8):e40808. doi: 10.1371/journal.pone.0040808. Epub 2012 Aug 1.

15 comments on PubPeer (by: Comment from PubMed Commons, Unregistered Submission, Peer 3)



Competing interests declared: I work in a voluntary capacity for the Irish ME/CFS Association
 

Dolphin

Senior Member
Messages
17,567
Table 3 Change in paid and unpaid activities across CFS/ME specialist services

There has been no change in my employment situation: 47.2% (186/394)

I have been able to return to work or increase my hours: 18.0% (71/394)

I have stopped working or reduced my hours because of CFS/ME: 30.0% (118/394)

I have stopped working or reduced my hours for other reasons: 4.8% (19/394)
While it is better to have data broken down like this, the same breakdown should probably applied to an increase in hours. If due to family commitments somebody stopped working or reduce their hours, their health was not necessarily worse but at the same time if people had previously not been working due to family commitments, their health is not necessarily better if they are now back working or have increased their hours.

So probably best to compare 18.0% with 34.8% (i.e. 30% + 4.8%)
 
Last edited:

Dolphin

Senior Member
Messages
17,567
Overall, how much do you feel your health has changed since you first came to the CFS/ME service?

Much better or very much better 27.5% (115/418)

A little better, no change or a little worse 64.6% (270/418)

Much worse or very much worse 7.9% (33/418)

----

Overall, how much do you feel your CFS/ME has changed since you first came to the CFS/ME service?

Much better or very much better: 26.2% (104/397)

A little better, no change or a little worse: 66.5% (264/397)

Much worse or very much worse: 7.3% (29/397)
It is interesting to see how close the figures match. Usually they just ask about overall health/change in research studies. This is presumed to represent change in CFS/ME. But of course people's health could deteriorate for other reasons or alternatively other health problems could improve independent of CFS/ME. But here the percentages, as I said, are very similar.
 

Dolphin

Senior Member
Messages
17,567
In response to the question “Do you think that you are still suffering from CFS/ME?” 87% (341/391) responded “Yes”, 3% (11/391) “No” and 10% (39/391) were “Uncertain”.

Of those who responded “Yes”, 23% (78/339) also said that their overall health was much or very much better, compared with 82% (9/11) of those who responded “No” and 58% (21/36) of those who were “Uncertain”.
When I first read this, I thought the "no" group might mean a recovered group and a lot of those in the "uncertain" group might also be recovered.

However reading the 2nd line made me think of another possibility: some of those could consider that CFS/ME was a misdiagnosis and instead they had a different condition in which case they wouldn't consider themselves suffering from CFS/ME but you wouldn't consider them recovered from bad health.

Perhaps there are other additional ways the 2nd sentence can be explained.

Anyway the overall recovery rate following attending clinics is low.
 

Dolphin

Senior Member
Messages
17,567
Those who responded to the long-term follow-up questionnaire seems similar enough to do those who didn't respond:
Long-term (2- to 5-year) follow-up of former patients

Seven of the specialist services attempted to contact random samples of former patients who were assessed and treated in 2010, 2011, 2012 or 2013 (total N = 1265), and long-term follow-up questionnaires were returned by 30% (385/1265) of these patients (Fig. 5). Baseline characteristics (at time of assessment) were the same in patients who did vs did not respond, except that patients who responded tended to be older (43 (33–51) vs 38 (30–47) years, p < 0.001) (Additional file 1: Table S4), and less likely to have presented with comorbid depression (26.6% (89/335) vs 34.8% (247/709), p = 0.008). Otherwise, there were no differences between responders and non-responders in any other baseline characteristics or measures. There was no difference between the two groups in their responses to the Clinical Global Impression question “Overall, how much do you feel your health has changed since you first came to the CFS/ME service?” at 1 year follow-up, with 32% (84/263) of non-responders vs 38% (84/223) of responders indicating that they were very much or much better, 58% (153/263) vs 56% (124/223) reporting little or no change, and 10% (26/263) vs 7% (15/223) indicating that they were very much or much worse (p = 0.26).
 

Dolphin

Senior Member
Messages
17,567
Table 6
Change in activities and health across CFS/ME specialist services at 2- to 5-year follow-up

Paid work (employed/self-employed) since attending CFS/ME service

There has been no change in my employment situation: 41.4% (154/372)

I have been able to return to work or increase my hours: 23.7% (88/372)

I have stopped working or reduced my hours because of CFS/ME: 27.4% (102/372)

I have stopped working or reduced my hours for other reasons: 7.5% (28/372)

I'm just going to repeat my point from above:

While it is better to have data broken down like this, the same breakdown should probably applied to an increase in hours. If due to family commitments somebody stopped working or reduce their hours, their health was not necessarily worse but at the same time if people had previously not been working due to family commitments, their health is not necessarily better if they are now back working or have increased their hours.

So probably best to compare 23.7% with 34.9% (i.e. 27.4% + 7.5%)
 

Dolphin

Senior Member
Messages
17,567
The majority of former patients (85% (327/383)) responded affirmatively to the question “Do you think that you are still suffering from CFS/ME?”, 6% (22/383) said “No”, and 9% (34/383) were “Uncertain”. Of those who responded “Yes”, 23% (74/327) also said that their overall health was much or very much better, compared with 95% (21/22) of those who responded “No” and 62% (21/34) of those who were “Uncertain”.
As I pointed out above, people could rate themselves as no (or uncertain) because they considered CFS/ME as a misdiagnosis rather than that they were fully back to health.
 

Dolphin

Senior Member
Messages
17,567
One thing that is missing from this paper is a comparison with the results from an earlier (2013) study that looked at the English clinics.
Crawley E, Collin SM, White PD, Rimes K, Sterne JA, May MT. Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database. QJM. 2013;106(6):555–65.
Free full text:
https://academic.oup.com/qjmed/article-lookup/doi/10.1093/qjmed/hct061

From my recollection, the results seem similar though there was no employment data reported in the earlier study.
 

Dolphin

Senior Member
Messages
17,567
Arguably the biggest spin occurs in the conclusion section:
Conclusions

This multi-centre study in the NHS has shown that CFS/ME is a long term condition that persists for the majority of adult patients even after receiving specialist treatment. Whilst 50–65% experienced little or no change in their condition 1–5 years after accessing a specialist service and 10–20% reported a deterioration, up to 30% of patients reported very much or much better health (and the majority of those who experienced little or no change had improved slightly). Given the adverse impact of CFS/ME on patients and their families, substantial improvement in 20–30% of the approximately 8000 patients treated each year by specialist CFS/ ME services in England represents a large individual and societal benefit, and supports the argument that services need to be sufficiently resourced to treat promptly all newly diagnosed patients according to individual need.
There is no mention that simply giving people a diagnosis without the specialist services would likely lead to an improvement in some people over time.
 

Dolphin

Senior Member
Messages
17,567
They combine "much better" and "very much better" across the paper. If one looks at this figure, it is clear that a lot more people rated themselves as "much better" than "very much better". Indeed for 3 services, nobody marked themselves as "very much better".

View attachment 22521
Actually from this figure in the supplementary files, one can see the different numbers on the CGI:
n=403
"very much better": 25 (6.2%)
"much better": 92 (22.8%)
"a little better": 156 (38.7%)
"no change": 65 (16.1%)
"a little worse": 51 (12.7%)
"much worse": 23 (5.7%)
"very much worse": 11 (2.7%)
Collin 2017 12913_2017_2437_MOESM2_ESM.png
 
Messages
15,786
The most interesting thing is that only 8.2% said they no longer had CFS 5 years after treatment. 35.1% said they were "much better" or "very much better" compared to when they started at the clinic, which seems to suggest that the CGI isn't a good measurement for determining recovery.

"very much better": 25 (6.2%)
So maybe "very much better" is a decent representation for a patient thinking they are fully recovered. But it's interesting that at least 25% of the "don't have CFS now" group don't rate themselves as being very much better. Maybe that's our misdiagnosed group?

In any event, it's obvious that "much better" pretty explicitly indicates that a patient does not think he or she has recovered from CFS.
 

lilpink

Senior Member
Messages
988
Location
UK
"“Do you think that you are still suffering from CFS/ME?”, " is a very leading question given "Study population 7901 patients had a new CFS/ME diagnosis recorded during the study period.".

Perhaps it would have been better to ask " do you think that you are still suffering from our own version of what we choose to call ME and which most ME patients do not recognise as being representative of the illness"?

Edit : they actually choose to call it 'CFS/ME' . Same contention applies .
 
Last edited: