Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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ME/CFS meeting at the Royal Society of Medicine - March 18th 2015

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Mar 17, 2015.

  1. charles shepherd

    charles shepherd Senior Member

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  2. justy

    justy Donate Advocate Demonstrate

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    Will it be any good though? will they be talking about any of the latest research - Fluge and Mella, Hornig and Lipkin, 2 day exercise tests, Rituximab at UCLA?
     
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  3. charles shepherd

    charles shepherd Senior Member

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    As you will see from the programme, and from my own presentation, the RSM wanted to put on a meeting that will cover controversies, differences of opinion and uncertainties surrounding ME/CFS.

    I only have 30 minutes to cover what are key areas of uncertainty and controversy relating to nomenclature, definition, cause, diagnosis, and treatment but I have 38 slides - which I will put on the MEA website in due course - and will certainly be covering Rituximab, immune activation, cytokines and neuroinflammation (five slides including the Japanese PET research and the findings from our UK post mortem research group on dorsal root ganglionitis).

    Unfortunately, there is a limit to what you can cover in 30 minutes...
     
  4. Esther12

    Esther12 Senior Member

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    Good luck kicking some arse.

    Also:

    It's important to challenge the pretence that controversy around ME/CFS is primarily about aetiology, rather than the spin and exaggeration that surrounds claims about the value of CBT/GET. They seem to be trying to set things up in an unhelpful manner. That people claiming a 30-40% recovery rate for CBT/GET can also state that the cause of symptoms is unknown does not mean that patients are wrong to be angered by their falsehoods.

    I don't think that Santhouse is a great person to have explaining what it is that we do and do not know about CFS, and it's a bit funny that someone making money from an ME/CFS service is there to tell people whether these services 'work'. I wonder what she thinks?

    Personally, I'd focus on comparing results from CBT/GET to placebo and the spin around PACE's recovery claims. The recent mediation paper could leave room for some mention of how this spin falsely promotes certain aetiological models. Those have been the key areas of controversy over the last five years imo. I know that there's a lot one would want to try to get in though.

    edit: Missed the above post from Charles. 30 mins is a struggle.
     
    Last edited: Mar 17, 2015
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  5. eafw

    eafw Senior Member

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    Sounds interesting, will you be reporting back on the rest of the discussion as well ?
     
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  6. charles shepherd

    charles shepherd Senior Member

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    I don't have the luxury of unlimited time….

    Just five minutes to open and close plus 5 minutes each on name, definition, causation, diagnosis and management

    I have slides comparing the (very differing) results from RCTs involving CBT and GET to the results from the large MEA patient surveys

    I'm not doing a slide on PACE - but we will no doubt talk about the PACE trial during the discussion session
     
  7. charles shepherd

    charles shepherd Senior Member

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    Yes, I will do a report for the MEA website but it may not be immediate

    I have an awful lot of other work sitting in pending right now!
     
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  8. Valentijn

    Valentijn Senior Member

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    Anna Gregorowski doesn't look useful either. She's a nurse at a clinic which is very pro-GET and favors deconditioning theories.

    Fiona Godlee doesn't look completely unreasonable in her article at http://www.bmj.com/content/342/bmj.d3956 , aside from her uncritical acceptance of the PACE results and claims of harassment by militant patients :rolleyes:

    Dr Luis Nacul is involved in the UK biobank for ME/CFS.

    Dr Gabrielle Murphy is a staunch support of quackology, and signed on to the letter (2nd down) at http://www.independent.co.uk/voices...-online-postings-2-december-2012-8373777.html

    So it looks like it'll be the Countess of Mar, Dr Shepherd, Dr Nacul, and a nest full of quacks. Hopefully our advocates can at least raise some doubts regarding the psychosomatic claims and cures.
     
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  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I gained an impression from this post et seq. in another thread that you were not aware of any CBT/GET studies using objective measures which showed efficacy. Is that correct?
     
  10. charles shepherd

    charles shepherd Senior Member

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    The point I was making was that I didn't have the time to plough through all the CBT and GET clinical trial papers to see if any of them had any really sound objective data relating to efficacy

    If anyone wants to take on this task please do so and let us/me know if there are any results worth looking at!
     
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  11. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    So when you say
    you're not looking at any with objectively-measured data? I'm just trying to clarify what kind of studies you are using for these comparisons. I'm not passing any judgement.
     
  12. charles shepherd

    charles shepherd Senior Member

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    I have a few slides relating to CBT, GET and Pacing - mainly comparing the way in which the results from RCTs do not mirror the patient evidence on efficacy and safety for these three interventions.

    This is the point I want to make -and if there is time during discussion I have some quotes from people who took part in our most recent CBT, GET and Pacing survey.

    I'm not going into any great detail on the CBT and GET studies but do have the percentage figures for patient evidence in relation to CBT, GET and Pacing
     
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  13. GracieJ

    GracieJ Senior Member

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    Good luck and God bless.
     
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  14. charles shepherd

    charles shepherd Senior Member

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    Thanks

    The Countess of Mar has just sent me a copy of what she is going to say tomorrow - I will ask her if we can publish it in due course. I don't see any problem.

    I speak without notes - so don't have a transcript, but will put my PP slides on the MEA website once the meeting is over.
     
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  15. Snow Leopard

    Snow Leopard Hibernating

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    The controversy is this: no changes in measures of actigraphy, neuropsychological testing and employment outcomes (or physical fitness for GET). Yet few seem to question whether this means that the self-report results after such unblinded trials are untrustworthy. The meta-analyses seem to routinely ignore this, but then again, the meta-analyses are done by the same people who are promoting the therapies, so the allegiance effect is in full swing.

    There were two analyses by the Dutch group though:
    http://www.ncbi.nlm.nih.gov/pubmed/20047707
    http://www.ncbi.nlm.nih.gov/pubmed/17369597
    (Amazing, that they didn't question the validity of the self-report results instead, but...)



    With regards to PACE, the key is that that more patients were on welfare after PACE than before, with no difference due to which arm of the trial they were in. Likewise there were no effects on employment outcomes. The first question you will get asked, is 'oh, that is because the state of the economy' except that prior studies conducted during boom periods have the same results and therefore the state of the economy had no effect on the results.

    Attached excel summary of employment data (old analysis, before the PACE cost effectiveness paper).

    edit - attachment removed.
     
    Last edited: Mar 20, 2015
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  16. Esther12

    Esther12 Senior Member

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    Without showing how results from RCTs have been misrepresented, putting them up against patient surveys might be a difficult point to make. The time limit makes it tricky, but there can be a tendency to move patient groups into only talking about patient's 'lived experience', instead of really going after the poor quality work of a lot of researchers, and with CFS, that puts us in a really weak position.
     
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  17. charles shepherd

    charles shepherd Senior Member

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    You make some very valid points - which may well come up tomorrow as well

    If you recall I raised the issues of benefit and employment status in the follow up to the PACE recovery paper. This was the reply from Peter White at the time:

    REPLY
    The definition of recovery from any chronic illness is challenging. We therefore agree with Cox (20I3) and Courtney (2013) that no single threshold measurement is sufficient; this is why we measured several domains of improvement and combined them into a composite measure of recovery (White et al. 20l3). Shepherd (2013) suggests asking patients whether they recovered as a result of [our italics] receiving a treatment; we did not ask this since it is not possible for individuals to ascribe change to one particular source in exclusion from all others, such as regression to the mean or external factors.

    Maryhew (2013) suggests self-ratings may be biased when participants cannot be masked to treatment allocation; this may be true, but is inconsistent with cognitive behaviour therapy (CBT) being more effective than adaptive pacing therapy (APT) when treatment expectations were significantly lower before treatment (White et al. 2011).

    We dispute that in the PACE trial the six-minute walking test offered a better and more `objective’ measure of recovery, as suggested by Agardy (2013), Maryhew (2013), and Shepherd (2013). First, recovery from chronic fatigue syndrome (CFS), which is defined by a patient’s reported symptoms, is arguably best measured by multiple patient-reported outcome measures, rather than a single performance test. Second, and importantly, there were practical limitations to our conduct of the walking test. Due to concerns about patients with CFS coping with physical exertion, no encouragement was given to participants as they performed the test, by contrast to the way this test is usually applied (Guyatt et al. I984; American Thoracic Society, 2002). Rather than encouragement, we told participants, `You should walk continuously if possible, but can slow down or stop if you need to.’ Furthermore we had only 10 metres of walking corridor space available, rather than the 30-50 metres of space used in other studies; this meant that participants had to stop and turn around more frequently (Guyatt et al. I984; Troosters et al. I999; American Thoracic Society, 2002), slowing them down and thereby vitiating comparison with other studies. Finally, we had follow-up data on 72% of participants for this test, which was less than for the self-report measures (White et al. 2011).

    Economic data, such as sickness benefits and employment status, have already been published by McCrone et al. (2012). However, recovery from illness is a health status, not an economic one, and plenty of working people are unwell (Oortwijn et al. 2011), while well people do not necessarily work. Some of our participants were either past the age of retirement or were not in paid employment when they fell ill. In addition, follow-up at 6 months after the end of therapy may be too short a period to affect either benefits or employment. We therefore disagree with Shepherd (2013) that such outcomes constitute a usefulcomponent of recovery in the PACE trial.

    We agree with Carter (2013) that there is a difference between sustained recovery and temporary remission; this is why we were careful to give a precise definition of recovery and to emphasize that it applied at one particular point only and to the current episode of illness (White et al. 2013).

    Despite the complexities of measuring recovery, we believe that our approach of using multiple self-report measures provides a reasonable approach to inform clinicians’ and patients` choice between available treatments.

    The findings from the PACE trial are clear; however we measured recovery, CBT and graded exercise therapy (GET) were more likely to lead to recovery, when added to specialist medical care (SMC), compared to either adding APT or SMC alone. Recovery after SMC alone, using our composite criteria, was only 7% – the same as that without treatment (Cairns & Hotopf, 2005) – whereas three times as many (22%) recovered after receiving CBT or GET. The PACE trial has shown that both CBT and GET are moderately effective, safe, cost-effective, and are more likely to lead to recovery (White et al. 2011, 2013; McCrone et al. 2012). These treatments should now be routinely offered to all those who may benefit from them (Crawley et al. 2013].

    Declaration of Interest
    Declaration of interest is as stated in White et al. (2013).
     
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  18. Esther12

    Esther12 Senior Member

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    Employment might be a difficult outcome measure to use as part of a recovery criteria, but if you're testing interventions in a non-blinded trial and they only lead to some improvement in subjective self-report measures, and no improvement in the low levels of employment and high levels of disability benefit claims, then that should indicate a problem with your claim of a 22% recovery rate. Never mind others claiming PACE thowed a 30% recovery rate, or Crawley even reaching for 30-40%.

    This sort of spin, and the refusal to release the results for the recovery criteria laid out in the trial's protocol is just shameful quackery.

    Even the recent Evidence Review, which largely down-played problems with non-blinded trials of CBT and GET recognised the failings of PACE's recovery claims:

    http://www.effectivehealthcare.ahrq.gov/ehc/products/586/2004/chronic-fatigue-report-141209.pdf

    That's just BS considering the nature of the therapies being examined and the specific claims being made to patients. eg: Those receiving CBT and GET were told that previous trials had already found these interventions to be effective!

    If homoeopaths tried to get away with this sort of nonsense, I bet that the RSM would be wiling to condemn them for it.

    PACE totally failed to provide real justification for their abondonment of the protocol recovery criteria:

    1) SF36: Their justification was that the population data they were using showed that about half of the working age population had a score under 85. False: http://link.springer.com/article/10.1007/s11136-014-0819-0

    2) Chalder Fatigue Scale: Their justification was that one of their PI's had re-released data collected in the 90s (long before they devised criteria for recovery in protocol) in a new paper that let them justify a threshold that overlapped with their entry criteria.

    3) Self-rated CGI: They just decided amongst themselves that lowering the criteria would better represent the process of recovery.

    4) Not fulfilling any criteria for CFS. Someone pointed out that this was loosened for their primary criteria to just Oxford, although results for additional analyses were also provided (not double checked this last point)
     
    Last edited: Mar 17, 2015
  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    There might be a polecat or two in the audience. I think things are getting a bit interesting.
     
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  20. Snow Leopard

    Snow Leopard Hibernating

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    There seems to be a double standard with pharmacological trials, where anything other than double blinding or objective results is considered to be insufficient, and non-pharma trials where self-report results are trusted, in spite of not having a placebo control group. The APT was not an equivalent of a placebo control group and could easily be biased in whatever way the practitioners liked.

    It makes you think... Lets just say that someone did an open label randomised trial of say, Cyclophosphamide, and this couldn't be blinded due to obvious (nausea) reasons. Lets just say that the results were quite promising, this would be the same quality of evidence as the PACE study. Yet I doubt it would be interpreted as such in the medical community.
     
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