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Kim McCleary letter to Lancet

Discussion in 'General ME/CFS News' started by SpecialK82, Mar 5, 2011.

  1. Dolphin

    Dolphin Senior Member

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    I'm not sure if you know but it only became known on the Thursday that the study was coming out on the Friday. We did have a general idea it was coming but it had been expected since around October. I read all the manuals that had been leaked, both out of general interest and also to help understand it, but I'm not sure I would have paid anyone to do that. Also I read them in October/November and have forgotten a lot of them!

    I find it an interesting question as to who should write in. Unless one allocates CEO(s)/similar quite a bit of time to follow the literature and discuss points with others, their letters may not get at a lot of issues. And normally any one letter can only touch on a small number of points which is why I've come to conclude we need as many people as possible writing in.
  2. Hope123

    Hope123 Senior Member

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    In truth, I think the CAA got caught with its pants down with the PACE study but so did most people, myself included, and groups in the US. I did expect better of them though; after all, they and we and I knew that PACE was coming from the UK. (And you had been informing me about it for weeks/ months!)

    They should have been reading the stuff from the UK but they got caught in American exceptionalism; I am not sure the CAA reads or understands the situation in the UK or talks to UK advocacy groups. (For myself, I will take credit that I did look at some UK stuff, esp. surveys months before! Can I have my cookie now?!)

    I suggest the CAA and everyone learn from this and 1) be more prepared in the future 2) work with not just domestic but international groups.
  3. SOC

    SOC Moderator and Senior Member

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    Something to think about --
    If you were a journalist, advocate, politician, or philanthropist thinking about getting involved is the issues surrounding ME/CFS and you came here and read these threads where patients are ripping apart a leader of a patient organization because her letter was not timely/well-crafted/whatever enough, would you be willing to invest your energies in this cause?

    We may not like the way Ms McCleary runs the CAA. That's a reasonable position to take. I'm concerned, though, that publicly trashing her over this letter, however imperfect it is, doesn't present us in a very good light.

    Perhaps such comments should be made in a less public forum and should be aimed at altering the management of CAA in a constructive way rather than simple ripping into her like rabid dogs.

    Yes, I wish her letter was better, but it was an effort (however misguided in some minds) to help. Trashing people who are trying to help, even if they are not very successful, is not a way to encourage more people to help us.
  4. OverTheHills

    OverTheHills

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    Dolphin you have made some good points here. I have always wondered why the CAA does not make more effective use of volunteers? You are right that it is a waste of precious resources for paid employees of an ME charity to write rebuttal letters themselves but they could usefully co-ordinate letter-writing volunteers. Not every patient is cognitively capable or has the right background for the scientific/statistical issues in the journals, but there are newspaper and political letters too. It seems to me a good way for an efficient and effective non-profit to work.
    OTH
  5. Sean

    Sean Senior Member

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    Fair enough.

    But some of the critics are above average for relevant knowledge and writing skills, and have previously made good points on the forum. And they might even get a fair bit of help from others if they give it a go.
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Good point. The first paragraph is inapposite and just stuck in there. It makes it unlikely that it would get published in the print edition since it has irrelevant content.

    I liked the second paragraph.
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    sickofcfs, I think you've been around long enough to see that patients have been constructively criticising Ms. McCleary for years and there's not much change. A case of too little, too late. I don't think this letter was bad and if i were looking at it in a vacuum, i wouldn't really think to criticize it. I think the criticism is more a reflection of the overall dissatisfaction with CAA and their not going far enough to redeem themselves.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree. Ms. McCleary can't be expected to do everything herself. But a leader paid at her level should be able to rally the troops and organize volunteers and that hasn't been done despite offers of talented people to help.
  9. SOC

    SOC Moderator and Senior Member

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    I'm not arguing with that, justinreilly. I think we need to do something about the CAA and its management, and I understand everyone's frustration with Ms McCleary. I think that our efforts to change the CAA probably need to be more forceful than they have been up to now. But perhaps we need to do that in a less public forum.

    My point is that we have to be aware of how we present ourselves to people who may be (finally) seeing our dilemma for the first time. Those people don't have our history, so all they're going to see -- at first anyway-- is what we look like today. If what they see is us persistently attacking people who (as far as they can see) are trying to help us, they're less likely to want to help. It's human nature.

    We want help. Let's not scare away or turn off the people who might be willing to do so.
  10. ixchelkali

    ixchelkali Senior Member

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    I'm not impressed. The poor headlines in the press aren't the issue, at least not for Lancet. I wish she had attacked the validity of the study, starting with the use of the Oxford criteria. I wish she had pointed out that as long as they use an invalid patient cohort, their results have no validity for ME/CFS. I wish she had said that chronic fatigue is not the same thing as ME/CFS. I wish she had said that you can't measure the effect of exercise on people who suffer from post exertional malaise unless you include post exertional malaise in your case definition. I wish she had objected to Lancet publishing papers that don't AT THE VERY LEAST use internationally accepted research definitions for the disease being studied instead of the meaningless Oxford criteria. I wish she had called for adoption of the Canadian consensus criteria for ME/CFS research. But she didn't.

    And yes, I could write my own letter to Lancet. But my voice as a patient doesn't carry the same weight as the CEO of a large patient organization. I can be dismissed as just another deluded neurotic patient.

    I don't think Kim McCleary's letter did much for patient advocacy.
  11. garcia

    garcia Aristocrat Extraordinaire

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    You are comparing people with a debilitating neuro-immune disease which can make even basic thinking a chore, with someone who is healthy, head of the largest "advocacy organization" and paid $180,000 to do a job. Hardly a fair comparison.

    Care to name names, i.e. who in particular are you referring to?

    BTW I have nothing against people writing in letters. I think it is a good thing. What I object to is certain people making an equivalence between McCleary writing in (which she absolutely should be doing as part of her job description) and very sick patients for whom writing letters to journals may be anything but straightforward.
  12. jace

    jace Off the fence

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    Too little, too late

    There are very strict rules re responding to articles in the Lancet. The deadline was 14 days after on-line publication. March 4th. Ooops Kim.

    There are many points in the PACE study (1) that require criticism. I cannot post the letter I submitted, in case it jeopardizes publication, but one key point was that they changed the outcome measures from the ones stated in the study design (2).

    They decided, mid-study, to reduce the SF36 score (3) designated as "recovery" from 75 to 60. An SF36 score of 60 is normative for 75 - 84 year olds. The average age of study participants was 38. Even more damning, the entry criteria included an SF36 score of 65 or lower.

    Actometers were purchased, and used to assess patients at the start of the study. They were not used to measure outcomes, which rings big alarm bells with many. Instead, the subjective blunt instrument of the Chalder Fatigue Scale (4) was used, and the subjective 'improvements' so measured equate to 6 - 7 points on that 33 point scale. Hardly a world beating result.




    1) White, PD; Goldsmith, KA; Johnson, AL et al Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial; The Lancet, Early Online Publication, 18 February 2011doi:10.1016/S0140-6736(11)60096-2

    2) PD White, MC Sharpe, T Chalder , JC DeCesare and R Walwyn for the PACE trial group; Protocol for the PACE trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy; BMC Neurology 2007, 7:6

    3) Bowling, A; Bond, M; Jenkinson, C and Lamping, DL; Short Form 36 (SF-36) Health Survey questionnaire: which normative data should be used? Comparisons between the norms provided by the Omnibus Survey in Britain, the Health Survey for England and the Oxford Healthy Life Survey; Oxford Journals Medicine Journal of Public Health Volume21, Issue3 Pp. 255-270

    4) Chalder, T; Berelowitz, G; Pawlikowska T; et al: Development of a Fatigue Scale; J. Psychosom. Res. Vol.37, No.2, pp 147-153, 1993

    That took me 30 minutes. But then I know the subject.
  13. Dolphin

    Dolphin Senior Member

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    I don't think we know that Kim didn't post hers on or before Friday.

    Here is what one person said:
    It was only in the print edition on Friday/Saturday of this week.
  14. Dolphin

    Dolphin Senior Member

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    Thanks for your thoughts.
    It is an interesting question.
    You may be right that this is the model to go by.

    Saying that, who are these volunteers who aren't writing to the Lancet (or wherever) but would write if the CAA asked them?
    And presuming they exist, why would they necessarily be CAA supporters or even be in the US?
    i.e. presumably they would be in various countries and various groups could be writing in. And that if they were capable of writing such a letter, they could still write one whether the CAA asked them or not.

    Aside: one thing that has made me feel some extra responsibility is having English as my first language. I think a letter writer will need to be very fluent in English. Letters if anything have to be at a higher standard of English than even papers where the data may speak for itself and the word count may be less of an issue.
  15. SpecialK82

    SpecialK82 Senior Member

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    My thoughts exactly - thank you for summing this up SickofCFS.

    I have not read this whole thread since I posted it because I can't handle the drain on my energy from all the negativity. I do know one thing - we all have a common enemy in the UK's stance on ME/CFS - trying to enlighten them or the medical community on ME/CFS is like the battle of David and Goliath. When David is out there trying to mount a fight, it is in all of our best interests to stand behind him, and give him ammunition, not tear him down. I can't understand why we as the patient community can't stand together on the most important things, and then work within our communities to make us stonger on points of disagreement.
  16. Dreambirdie

    Dreambirdie work in progress

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    I don't agree with your perception that we are publicly trashing McCleary... like a bunch of "rabid dogs." C'mon... rabid dogs... really? :rolleyes:

    Aren't we really more like a bunch of very pissed off pussy cats? (see below)

    It is McCLEARY'S JOB as OUR ADVOCATE to advocate on our behalf. Hello! She is doing that job VERY POORLY, and has been doing it very poorly for a long time. She needs to be called out on it, and that's what we are doing here.

    We have attempted "altering the management of the CAA in a constructive way" many times before, with absolutely NO success.

    Sometimes being nice and sweet is just the wrong way to go. Sometimes you need to put your teeth into the equation.

    [​IMG]
  17. Dolphin

    Dolphin Senior Member

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    Charles Shepherd on the MEA FB page earlier today:
  18. CBS

    CBS Senior Member

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    If I were a journalist, advocate, politician, or philanthropist thinking about getting involved is the issues surrounding ME/CFS and I read Kim McCleary's pathetic efforts at energizing support for this disease I'd assume that ME/CFS wasn't really all that serious and that it wasn't worth my time, money, or effort to get involved.

    And by the way, long before these forums were created, the CAA's budget was in a nose dive and that was more than enough proof that they'd lost the ability to generate interest.
  19. Snow Leopard

    Snow Leopard Senior Member

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    The problem is the limitations imposed by the editors. 250 words, 5 references (including the original studies) and attacks must be scientific if you wish to be published.

    As far as how much further, with physiological research.. A little bit further.
    The fact is that it will likely cost hundreds of millions-billions to cure CFS.
    The real danger of psych/behavioural studies is the negative sum effect that they have - dissuading researchers and diverting funding if those in charge believe it is merely a behavioural disease.

    If you were a journalist, politician or experienced philanthropist, chances are, you would have seen such politics before!
  20. Cort

    Cort Phoenix Rising Founder

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    Give her a cookie...:)

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