A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
Discuss the article on the Forums.

NHS Oxford CFS/ME service site talks a lot of recovery...always very vaguely. Anecdotes coming soon!

Discussion in 'General ME/CFS News' started by Esther12, Apr 30, 2015.

  1. Esther12

    Esther12 Senior Member

    Messages:
    8,293
    Likes:
    26,871
    This isn't at all important, but a few CFS/ME centres seem to be quite shamelessly following the sales tactics of Phil Parker and other 'alternative' money makers. Lots of wonderful talks about 'recovery', no real figures provided. They seem to realise they're really stretching what 'recovery' could mean, and provide little hints of this, but to patients who don't know how untrustworthy a lot of CFS quacks are, they're unlikely to see through it. None of this is really important, but I think it's funny/sickening, and thought others might too.

    http://www.oxfordhealth.nhs.uk/service_description/oxfordshire-chronic-fatigue-syndrome-me-service/

    It seems that everyone's recovering. How cheering.
     
    Last edited: May 3, 2015
  2. alex3619

    alex3619 Senior Member

    Messages:
    12,269
    Likes:
    33,703
    Logan, Queensland, Australia
    Testimonials - a favoured technique of quack treatments and a marketing ploy. In this case they are currently only promising testimonials though. I could probably sell the worst quack treatments ever using testimonials.
     
    Valentijn, Effi, SOC and 6 others like this.
  3. Esther12

    Esther12 Senior Member

    Messages:
    8,293
    Likes:
    26,871
    Yeah - why put this up?:

    What did they think people would think?

    "Ooh - actual testimonials coming soon? They must really know what they're doing."
     
    Valentijn and Purple like this.
  4. user9876

    user9876 Senior Member

    Messages:
    2,426
    Likes:
    16,506
    We should remember that in the new world of the NHS these are commercial organisations touting for work from clinical commissioning groups. As such I would have thought that the advertising standards apply to them but from what is quoted here it seems quite carefully worded not to make actual claims.

    I find the phrase 'varying degrees of recovery' very strange others use 'partial recovery' but surely you are recovered or not recovered and recovery shouldn't be seen as a continuous scale from very ill to better. Also they point to the nice guidelines in talking of recovery but I thought they just talked of management.

    It does seem very 'alternative' medicine like but then as I said they are a commercial organisation touting for work.
     
    Valentijn, justy and Sasha like this.
  5. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,415
    Likes:
    10,009
    Cornwall, UK
    In the last few months I've had 2 friends of the family send me "You've got to try this. There's a cure!" type emails referring to Parker's process. One of these people had a niece who was 'cured' of ME (after a few months of chronic fatigue), the other just read about it somewhere. So the marketing sure works.

    The problem is it's really hard to explain to people why it's a load of baloney without offending them and without appearing ungrateful. It creates a lot of guilt. And the people who pass on this stuff tend to be left with the impression that you don't really want to get better because you completely ignored this fabulous 'treatment' they had heard about. It's a viral form of pester power.
     
    Valentijn, Effi, SOC and 2 others like this.
  6. Sean

    Sean Senior Member

    Messages:
    3,190
    Likes:
    17,388
  7. anciendaze

    anciendaze Senior Member

    Messages:
    1,774
    Likes:
    4,502
    Incidentally, this connects with a question I've had about the PACE results. Just from the very limited public data I've seen it appears that a substantial percentage of those patients were considered non-responders by the authors themselves. What happened in the portion of the group considered responders? What have been reported are mean values for the group, plus changes in standard deviation.

    There are many ways to get the reported numbers. One which interests me is the possibility there were misdiagnosed patients who experienced recovery to population norms of performance. In the case of the 6-minute walk test this could amount to hundreds of meters improvement in performance in a single patient -- which, all by itself, would pull the group mean up by some meters. How many cases of misdiagnosis would it take to produce the reported figures? This could expose claims that this was a thorough study done on 641 patients to reveal the solid success was confined to a number who could fit in a single van, and may have had an entirely different problem.

    At the other extreme, we could assume the figures for group mean were pretty close to the improvement experienced by the bulk of the test group. If this were the case, we would have rather obvious inference that the reported gains would not be considered clinically significant even if we were dealing with such known serious conditions as heart failure. This is completely separate from questions of statistical significance, (which I've already attacked as depending on dubious assumptions about distributions.) Statistical significance which falls short of clinical significance would say "yes, you did something; no, it was not worth doing."

    All this is tied to the assumption that you really care about medical benefit to patients. The benefits that accrue to those who are able to deny disability claims, monetize ineffective treatments and evade need for public spending on effective treatment are a very different matter.
     
  8. mermaid

    mermaid Senior Member

    Messages:
    581
    Likes:
    1,048
    Cornwall, UK
    Given that so much of CFS/ME is tied up in the UK with the psychiatric services, perhaps the word 'recovery' is therefore tied in with Mental Health meaning of the 'recovery model' which does not mean clinically recovered as we understand it.

    In fact it means in that context, staying in control of one's life or recovering a life worth living.

    Very confusing given the more normal understanding of the word, and as the mother of a son with schizophrenia who spends a lot of time asleep due to the drugs he is given to control it, I question it used in his circumstances also since he gets very little other support other than those drugs, due to the cutbacks in services.

    Here's a link that explains the word http://www.mentalhealth.org.uk/help-information/mental-health-a-z/R/recovery/
     
  9. Sidereal

    Sidereal Senior Member

    Messages:
    3,081
    Likes:
    17,051
    That's how I read it too.
     
  10. anciendaze

    anciendaze Senior Member

    Messages:
    1,774
    Likes:
    4,502
    I've tried to stay off the main PACE threads for reasons of mental hygiene. Close examination of the discrepancy between claims and data could easily lead to despair concerning the entire profession. I want those who are more closely involved to tell me if what I believe is going on is seriously in error.

    The original hypothesis was that CFS patients suffered from "false illness beliefs", possibly following a real illness. These beliefs were then said to lead to deconditioning, which entirely accounted for poor physical performance.

    One arm of the study used CBT to challenge those "false illness beliefs". After a year of such therapy there were substantial changes in self-reported ratings, which were taken to mean the therapy was successful in correcting those beliefs. This produced no change in any objective measure of physical performance.

    There are two possible inferences here: 1) the hypothesis that "false illness beliefs" were the cause of poor physical performance was falsified; 2) CBT was only effective in manipulating reports of condition, but was completely ineffective in changing underlying beliefs. The main reason I see for failing to draw these inferences is that people who are paid to perform CBT believe this is a good thing regardless of other outcomes.

    A second problem surfaces in the slender thread of remaining objective evidence connected with the GET arm of the study. There was an increase in distance walked in a 6-minute walk test of the same order of magnitude as the increase in the control group. (The control group gained 22 meters, the GET group added 39 meters to this. This still falls hundreds of meters short of healthy performance.) This was first proclaimed as evidence of a true change in conditioning after a year of therapy. Subsequently, an attempt to show improvement in general physical condition via a "step test" failed to confirm any change in physical condition.

    The logic now becomes tortuous. The slight improvement in distance seen in the GET group is reinterpreted to show a change in belief. There is a well-established simple explanation which the authors do not consider, a Hawthorne effect. People who are aware their performance is being monitored, and that this might have personal consequences, will perform better than those who are not monitored. To deny that subjects were aware that poor compliance with therapy might have a negative impact on benefits is delusional.

    If researchers are now scraping the bottom of the barrel for anecdotal evidence, we might also consider anecdotal evidence of coercion, which should not be hard to find.

    Added: I almost forgot one stunning piece of reasoning from the PACE authors. Neither CBT or GET alone showed any real, validated increase in physical performance, therefore the authors claim the combination of CBT and GET are effective! This combination was not tested on any group of patients. One wonders why they even bother to include patients in their research.
     
    Last edited: May 2, 2015
    Cheshire, Valentijn, Sean and 3 others like this.
  11. Sean

    Sean Senior Member

    Messages:
    3,190
    Likes:
    17,388
    Well, some of them reached 0.05, if that is what you mean. ;)
     
    Valentijn and sarah darwins like this.
  12. anciendaze

    anciendaze Senior Member

    Messages:
    1,774
    Likes:
    4,502
    I'm trying to cope with the twisted internal logic here, not questioning the numbers at the moment. If the changes in reports of condition reflect real changes in patient belief, then we have a falsification of the hypothesis that those beliefs were the only impediment to recovery. The alternative is that those subjective responses were manipulated without changing beliefs. This says the therapy was ineffective for the stated purpose.
     
    Valentijn, alex3619 and Sean like this.
  13. Sean

    Sean Senior Member

    Messages:
    3,190
    Likes:
    17,388
    I understand.

    Yep. However you look at the PACE results, there is a fatal lack of both explanatory and therapeutic power. It just isn't there.
     
  14. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,578
    Likes:
    12,174
    South Australia
    For what its worth, there was a notable increase in patients on welfare from initial enrollment, to final followup in all treatment groups of the PACE study, with similar outcomes across all groups.
     
  15. anciendaze

    anciendaze Senior Member

    Messages:
    1,774
    Likes:
    4,502
    While I don't think the increase was very great, I don't believe there was ever any possibility that the money spent on the study itself would actually decrease other expenses.

    The carrot of benefits and the implicit or explicit threat of denial were necessary to make the whole Rube Goldberg/Heath Robinson contraption of a study work at all. Patients are not going to engage in meaningless activities which waste limited energy and make them feel worse without bribes and threats.

    The peculiar accounting in evidence shows that this was only a small part of the cost of the study to the NHS. I had at first thought the reason for having even the control group getting specialist care was to prevent the horror of patients left to their own devices outperforming those receiving official therapy. I now believe this was a means of externalizing problems and associated costs to the regular NHS.

    Experience in private practice shows the cost of testing for organic conditions which might result in unexplained fatigue is quite substantial. You won't find that cost reflected anywhere in the published documents on this study. Should a patient have an undiagnosed heart condition, for example, you may need to run a number of expensive tests to make sure this patient will not die or suffer a heart attack during the study. This, like most problems, is simply left to those providing specialist care. Since the authors are the official experts on this illness it seems likely that a suggestion from them that a patient needed testing or treatment would be taken seriously by those specialists within NHS. At a minimum, those of the original 3158 patients considered for the study which the authors thought might be problems were simply left to the ordinary NHS.

    Reading the economic analysis reveals quite a different view of the future. The cost of excluding organic problems is ignored, since the NHS apparently already does an exemplary job of handling such things, in the authors' opinions. It is implicitly assumed that the entire intake cohort of 3158 patients should be treated as the 640 were. There is no need to worry about damage due to misdiagnosis and ill-considered treatment since these patients will no longer be under the close scrutiny those in this study have been.

    There is another assumption that this will result in lower expenditures for benefits, based on no evidence presented in the study. The obvious inference is that denial of benefits is a key factor in the economics of rolling out this treatment protocol to national scale. Even the cost of treatment per the favored PACE protocols is low balled by assuming treatment will be delivered by "less-senior" doctors costing half of what those used in the study cost. It seems clear to me this expanded plan for treatment of "CFS" is designed to provide a dumping ground for both troublesome patients and incompetent doctors, for both of which the NHS has a convenient surplus.
     

See more popular forum discussions.

Share This Page