The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

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

Discussion in 'Latest ME/CFS Research' started by AndyPR, Jul 15, 2017.

  1. AndyPR

    AndyPR Senior Member

    It's a Crawley paper so definitely not a recommendation.
    Open access at https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2437-3
     
  2. Hutan

    Hutan Senior Member

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    Well, no. Even from the abstract (so perhaps NICE will notice), only 115 patients are reported as being very much or much better one year after their baseline assessment. That's out of the 952 patients that there were baseline data for, many of whom weren't around to give 1 year data. 115 patients out of 952 is 12%.

    How many patients would have reported that they were very much better or much better without the clinics? We can't know, but
    • If you look at the Dubbo study, almost all people with a post-viral fatigue syndrome recovered in the first year or two.
    • ME/CFS is a fluctuating disease so some people will happen to feel a bit better at any particular point. For many of us, the early years of our illness were the worst time, perhaps due to the natural course of the illness and perhaps also because we were still trying to live a normal life with work and socialising and exercise.
    Then there's the impact of brainwashing...
    • It's likely that after a year of being told that they have to think positively to overcome their false illness beliefs and making an effort to get to the clinic sessions, some people are more inclined to tick boxes saying that they feel much better
    That doesn't leave a whole lot of people experiencing real benefit from the clinics.
    • Of those, there are probably some incorrectly diagnosed people, who don't actually have ME or CFS, and are helped by counselling and an exercise programme.
    • And much of the residual benefit could more easily be provided by a sympathetic and reasonably well informed GP and a few leaflets (e.g. management of sleep, advice on pacing) and a rational patient support group.
    Offsetting the low number of people feeling significantly better are the many people who felt worse and/or gave up on the clinics, the reinforcement of unhelpful beliefs about the nature of ME in the wider community and the considerable cost of providing these clinics.

    A much better approach than all of these clinics achieving very little that is good would be education for GPs so people with ME don't have to experience disbelief and do get support for illness management. And just a few really well resourced clinics with specialists who can properly diagnose ME and, in time at least, offer real treatments.

    Ok, now that I've reached a policy conclusion, I might possibly read the whole paper.
     
    Last edited: Jul 15, 2017
  3. Vonjones

    Vonjones

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    Always subjective answers, no actometers in sight :-(
     
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  4. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I haven't decided to read it yet either so have glanced over the methodology. Looks like the sample has been heavily screened up front to pick out the respondents she wanted? If I'm reading it right , for one specialist service this is as low as 23% of the original sample offered up which was also pre screened. It would be interesting to reanalyse her data with a more unbiased view and scrutinise the filters that have been applied. I'm also curious as to the variance of screening across the 11 specialist centers and what causes such a variance in screening out. overall she has ignored 54% of patients for one reason or another. I am also curious as to why she looked at the 11 centers she did?

    typical fudged figure manipulation on the face of it.
     
  5. Valentijn

    Valentijn Senior Member

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    The lead author on this one is Collin, so it might not have had a lot of involvement from Crawley. PEM is listed as a characteristic symptom, but not with a citation to any particular criteria, and no criteria are used for study participants.

    I hadn't heard of the NOD before, so I thought this was interesting:
    A lot of "follow-up" data was obtained while patients were still being treated, hence in an active state of the brainwashing procedure:
    It also sounds like those who didn't respond to the followup surveys were more ill at baseline. The non-respondents had worse scores on a very inappropriate questionnaire regarding "anxiety" (OI) and "depression" (disability), as well as higher incidence of migraine.

    It's actually a decent breakdown of data in the tables. 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.

    At 5 years, 30.9% increased their working hours compared to when they started at the clinic, versus 32% who reduced their hours due to CFS.

    On average, SF36 physical functioning (PF) questionnaire scores improved 5 points. Which is pretty meaningless - each question is measured in increments of 5 points, and questions overlap a lot, with larger clusters of points gained or lost if there's really a significant change. Those self-rated as much or very much better did have the biggest improvement is SF36 PF scores, but are still below the healthy median I think. They also started out a little higher that the patients who reported staying the same, and those who reported getting worse started out with the lowest scores and dropped a bit over 5 years:
    collins image.jpg

    It's interesting that they generally give the least detailed figures for the measurements where they claim improvement. And of course, they don't mention the reduced number of patients working due to ME/CFS:
    This is pure bullshit, but it's possible Collin doesn't know any better yet:
    He's leaving out PEM here, while still claiming it's a NICE diagnosis, which is Crawley's usual trick:
    Also a plug for PACE, probably courtesy of Crawley:
    The objective outcomes (work, school, etc) show no improvement, as do actometers when used. Maybe this just means the anecdotes are bullshit. But I like his interest in objective measurements:
    I think Simon Collin may have some potential. The paper is extremely data-focused, albeit with a lack of understanding regarding some issues, such as the problems with HADS. There's also a lot of blatant Crawley spin. But it looks like he's a research fellow primarily interested in epidemiology rather than CFS. So he likely relied on Crawley pretty heavily for information about ME/CFS, and it's not surprising that she fed him a lot of bullshit that ended up being published here.

    My concern about this paper is that the spin in the conclusion is focused on supporting PACE, by claiming clinical outcomes are similarly positive in this paper (thus PACE must have got it right). This might be geared at supporting the use of PACE in the evidence base for the upcoming NICE review, if one happens.
     
    Last edited: Jul 15, 2017
  6. Valentijn

    Valentijn Senior Member

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    There are work and school outcomes, albeit self-reported. They show no improvement.
     
  7. charles shepherd

    charles shepherd Senior Member

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    I've only just had a very quick look through a vast amount of data in this paper

    The data on education and employment does not seem to fit in with the conclusion above and I don't understand why there is no information on what I think is one of the most important and objective measures of improvement in health and/or disability in long term disabling conditions like ME/CFS: DWP benefit status (i.e. ESA and/or PIP)

    There is one caveat here in relation to DWP benefits - people do need to be asked if they are no longer claiming benefits whether this was as a result of a purely voluntary decision to stop a claim or was this due to the DWP terminating a claim?

    Would be interesting to know what Keith (G) thinks of this - when he has read it properly

    CS
     
  8. Valentijn

    Valentijn Senior Member

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    Another point of interest regarding their PACE comparison is that this treatment review isn't controlled. It only got roughly comparable figures by failing to compare outcomes with a group of untreated patients. Generally, untreated patients will also show a bit of improvement, which indicates some or all improvements are simply due to random fluctuations in the disease itself.

    So this may actually suggest that the controlled PACE results were over-inflated, which we already know is the case due to seeing the actual recovery data and protocol-defined analysis :p
     
    Last edited: Jul 15, 2017
  9. Sean

    Sean Senior Member

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    Surprise!

    :meh:
     
  10. Invisible Woman

    Invisible Woman Senior Member

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    So...the patients were cherry picked after already going through a selection process.....

    Most of the folk I know who have attended these clinics went along, found some of the advice helpful at first, then somewhere between 1-2 years found no further benefits and so it wasn't worth the effort etc of going there.

    So even before they start with all the selection processes etc. some people will have effectively deselected themselves.

    Perhaps it would be better to ask people who have decided not to continue attending these clinics their reasons for doing so. Anonymously, for the patients protection of course.
     
  11. MEMum

    MEMum Senior Member

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    I wonder if this will be used by EC to "confirm" that the disease/condition is different in adults and children, as she often says.
     
  12. TiredSam

    TiredSam The wise nematode hibernates

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    A review of the abstract is more than sufficient these days, even NICE aren't ashamed to admit that they don't bother reading the whole paper. And the BPS crew know it, all they need to do is write something with a few claims in the abstract and get it published. Then it can be cited and presented to policy-makers safe in the knowledge that no-one will actually read the whole paper with their brain switched on to check for inconsistencies. All the policy-makers want is a few "science" papers to wave around to justify their politically-based decisions, and EC provides that, so everyone's happy.
     
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  13. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Also worth noting that some clinics only see you for a maximum of a year and then discharge you back to your GP so there won't ever be a follow up after a year. I was seen every 8 weeks for 6 months and then after another 6 months of seeing me less frequently they wrote a letter discharging me back. They said up front in the group session that they would only see anyone for a maximum of a year since this is what is deemed to be sufficient to help all they can. They made no effort to reassess me after treatment via a questionnaire etc, nor did they use the Chalda scale.

    I suspect looking at the data that the clinics vary quite a bit in how they implement the "treatments". I think on balance my clinic was more realistic and less pushy than some. They also used the CCC as part of my diagnosis and had a specialist ME doctor who seemed quite clued up.

    Ii would be interesting to know whether my clinic was unusual or commonplace?
     
  14. Esther12

    Esther12 Senior Member

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    Hard to know if anything much can be said to be shown by this data. No control group and high drop-out. Hard to see any reasonable interpretation that is favorable to the coninued funding of these specialist centres though.

    I've noticed other BPS papers do this - it's like they're trying to morph their patient selection.

    I wouldn't assume Collin is any better than Crawley. He seems just as rubbish to me.
     
  15. Snow Leopard

    Snow Leopard Hibernating

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    Loss to follow up limits the generalisability of the findings, but most notable was only ~8% claimed to no longer have ME or CFS after 5 years. Similarly, the results on measures other than the Chalder Fatigue scale (which we know is inappropriate and is lacking in patient acceptability), are substantially poorer than the PACE trial - and the authors call it the "real world" results compared to the PACE trial...
     
  16. RogerBlack

    RogerBlack Senior Member

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    This paper has open peer review.
    https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2437-3/open-peer-review
    Of prof Hyland:
    Keely has published on
    I was interested to see there is a peer review question 'do you understand the statistics' to which one of the reviewers responsibly responded no.
    I do wonder what happens if both do.

    The dataset is available (not openly) at https://data.bris.ac.uk/data/dataset/3nfgkcm2ce6eg28rt02u86murj

    If this data does not contain personal identifiers, then the statement of 'risk of re-identification is medium to high' would seem to be incorrect (this precise argument was made for PACE data in the recent information tribunal).


    I do idly wonder if 'controlled' was a status before it was suggested to them.
     
    Last edited: Jul 15, 2017
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  17. Dolphin

    Dolphin Senior Member

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    It would be great if somebody could calculate the mean for the different outcome measures in this table. It is very frustrating they don't do this.

    It doesn't involve fancy mathematics, it's just a weighted mean.

    The data has now been posted here:
    http://forums.phoenixrising.me/inde...-patients-in-england.52845/page-3#post-876028
     
    Last edited: Jul 16, 2017
  18. Barry53

    Barry53 Senior Member

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    Has anyone ever done a study on how many papers these people produce per unit time? Is this rate of production ever actually commensurate with good science?
     
  19. Dolphin

    Dolphin Senior Member

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    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".

    12913_2017_2437_Fig4_HTML.gif
     
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  20. Dolphin

    Dolphin Senior Member

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    There are quite a few additional files:
     
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