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Kim McCleary letter to Lancet

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

  1. Esther12

    Esther12 Senior Member

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    I don't think it's fair to criticise the timing of this letter.

    It takes time to look at exactly what the paper showed, understand the measures used, etc, etc.

    I wouldn't have been able to provide a sensible criticism of Pace on the day it was released, and I don't think others here should be so quick to assume that they could. I think that patient organisations would have been better off not commenting if they'd not have access to the paper in advance... but many would have then attacked them for their silence.

    We didn't know what White etc were going to claim, or what evidence they had in support. Some patient organisations rejected CBT/GET out of hand, and were portrayed as being anti-evidence for doing so... even though it was White etc who were spinning the evidence. It's hard to reply rapidly to a 5,000,000 study that has been spun by experts who have had access to the raw data for over a year.
  2. Dolphin

    Dolphin Senior Member

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    And a reminder that the paper came out on Feb 18. Most patient reps I knew in the UK didn't have the paper on Feb 17 (some had got the press release but it didn't say much).
  3. Esther12

    Esther12 Senior Member

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    And even if they had been able to find problems in the way the data was present, they'd probably have wanted time to double check themselves. When you're just posting on-line you can be bold with your accusations, when you're the spokesperson for a big charity that wants to be taken seriously by those in power, you need to be a bit more careful.

    Is there a copy of the press release on-line anywhere?
  4. Dolphin

    Dolphin Senior Member

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    http://www.meassociation.org.uk/?p=4621
  5. CBS

    CBS Senior Member

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    And we're still waiting for that substantive well crafted reply. Nothing about the shifting cohort criteria, the patient groups that refused to participate,, etc.

    What I heard in her letter was that poorly worded news stories can do great harm.

    IRONIC?

    I could not agree more with her main point. Kim McCleary needs to heed her own words and find another job.
  6. Dolphin

    Dolphin Senior Member

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    I've read quite a few letters that have gone in and none of them made either of these points, that I can recall.*
    So
    (i) this letter is not unusual in that regard
    (ii) it'd be great if one or more people wrote letters making either or both of these points.

    *ETA: actually, perhaps there was a reference somewhere to the entry criteria changing from <=60 to <=65 - I'm not 100% sure what you are referring to.

    Anyway, it'd be great if people who think this is not a good letter wrote one in themselves. 250 words isn't particularly long - many posts to the forum would be longer.
  7. Doogle

    Doogle Senior Member

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    Ms. McCleary finally followed the script that patents on this forum, H.Johnson's, M.Kitei's, J.Herd's and other sites have been urging. This comes after the Petition to disassociate from CFIDS Association of America as our advocacy representative was started. It is obviously in her interest to try to win back trust from patients at this time. Unfortunately, I have seen too much advocacy at the CAA for Ms. McCleary's interests instead of patient interests over the years. It will take much more than this for the CAA to win back my trust.
  8. garcia

    garcia Aristocrat Extraordinaire

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    No, patients with a debilitating neuro-immune disease should not be expected to do the job that Kim McCleary is paid $180,000 a year to do.
  9. Dolphin

    Dolphin Senior Member

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    So are you happy to leave writing to medical journals to people like Chris Clark (former CEO, AfME), Peter Spencer (AfME), Mary Jane Willows (AYME), Val Hockey (former CEO, MEA) and other paid CEOs who don't have the illness?

    Would you happy to pay them to spend, say, a third/other percentage of their time to read the medical literature and regularly respond?

    It seems to me if patients aren't going to respond, if one wants people to respond, one will have to pay them to follow the literature. And one generally can't just respond to a paper without following/reading other research papers.
  10. CBS

    CBS Senior Member

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    Dolphin,

    Thanks for the push. I don't have it in me to do it this afternoon but I will do it tomorrow.

    As for KM's response, she wrote 244 words and the first paragraph (128 words) seem to be nothing more that a "don;t blame me defense" for the horrid news coverage (and the totality of the poor coverage was not her fault) but just like her orginal statements, using over 50% of your allotted space in this manner is another missed opportunity! She is nothing if not consistent.
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Not a bad letter.

    She's still got to go. The only thing at this point that would convince me to give her a chance would be them going ballistic with an all-out assault on the charlatans. We can't be mollified with little dribs and drabs here and there, hoping she has changed.
  12. CBS

    CBS Senior Member

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    And that is the best that can be said of it. there is nothing in the letter that ought to be retracted.

    I expect more than something that is just barely better than cringe worthy

    If I were a Lancet editor I don't think I could make it through the first paragraph without asking "who does she think she is addressing?" (the pissed off patient community?) and "what does she think I can do about the headlines in the papers?"

    Providing her perspective to the media is her job!
  13. Dolphin

    Dolphin Senior Member

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    It is a problem with writing letters either to newspapers or journals. In short letters (one had only 250 words here and newspaper letters generally have to be as short as possible), it is difficult to please both audiences (patients and editors/readers).

    Over the years, I’ve seen plenty of people send interesting letters to newspapers that make good points, but they were too long and never got published. I think one often has to be willing to sacrifice what the immediate reaction might be on the internet, to get it past reviewers/editors e.g. be happy you make one or two points reasonably well even if one hasn't dealt with all the points one would like to make.

    Personally with the PACE Trial, with only 250 words to play with, I think it’s hard to cover everything.
    I think it’s best if lots of people try to cover 1/2/3 points reasonably well.
    And given there are so many points to cover, that’s why I’m trying to encourage other people to write in.

    I’m also interested in the general issue of who should be writing to medical journals. For years, I was frustrated that all sorts of rubbish was going unchallenged. I felt I had a reasonable excuse as I was busy and ill; at the same time, it didn’t alter the fact that letters weren’t going in.
  14. LaurelW

    LaurelW Senior Member

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    What's with all the pussyfooting? The elephant in the room is that they just spent the equivalent of $8 million to study stuff that has proved over and over not to be beneficial to real CFS patients. Can you imagine how far we'd be today if that same money was spent on finding the physiological cause and a cure for the disease? That's the big issue here, and that's what the Lancet should be hearing.
  15. Dolphin

    Dolphin Senior Member

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    As I've said, I've seen quite a lot of letters now and off the top of my head (I didn't read some as closely as I read others), none brought up the cost/what could have been done with the money so if anybody wrote about that, it wouldn't overlap with most/all (??) letters.

    Possible idea: this could be combined with a point about the small increases gained, maybe saying something about other types of research are clearly needed.

    BTW, I think the letters I saw were generally pretty good - and because they contain specific criticisms (e.g. of the numbers), other types of letters might also get in like the point about the money could have been better spent (as a sort base will hopefully have been laid).

    ETA: I actually re-read the CAA letter and it did bring in the money issue. But other people could probably say it in a different way, maybe more directly (esp. if you have more words to play with and/or reference(s) left).
  16. Wayne

    Wayne Senior Member

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    Just read KM's letter. Have to say, she's not a good writer. Sad to say, she's a better writer than speaker.
  17. taniaaust1

    taniaaust1 Senior Member

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    Ok reply but FAR TO LATE!!!

    With all the money she gets paid.. this simple reply should of been almost immediately done. Responding to such a study should of been a priority, it was important to us all as a patient group and the lack of importance placed, showed just how out of touch they are with the group they supposively represent..

    The whole late thing shows incompedence.
  18. Sean

    Sean Senior Member

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    Agree.

    I make no comment on the quality of McCleary's letter (except that it might have trouble getting accepted, seeing as it does not cite the PACE paper itself).

    But if Garcia, and any similarly minded critics, think it is that easy to write a good letter, with just 250 words and 5 references, that covers all the important points and will be accepted by a journal, and do it in no more than two weeks...

    Well, please feel free to show us how it is done.
  19. SilverbladeTE

    SilverbladeTE Senior Member

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    Hm, I fear I could do a LOT better than that whimpy letter! ;)

    :thumbsup: :D

    apologies for language if it offends any of ya, but come on people! Some arrogant jerk offs who think abducting and torturing children is "Ok because WE KNOW BEST and you must bow before us gods of medicine!" and letting folk DIE rather than treat them, deserve every damn thing they get, including being cornholed in jail by Bubba who's mum had M.E. and didn't get no treatment and BOY will he be happy to met them! :innocent1:
    I'm against execution on a lot of grounds, but sometimes, sometimes...it's tempting, lol ;)
    I'd understand if mods would want ot alter the language of my post or delete it, but I think a hell of a lot of us would say even WORSE if they had the chance ;)
  20. Hope123

    Hope123 Senior Member

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    I am glad she sent a letter in and the points are fine but I feel like it took a lot of people pressuring her/ the CAA to do so. Getting a patient advocacy organization to send a letter in shouldn't be this hard. We should give them some space/ time though to respond to our concerns. I told the CAA my future donations to them would depend on how they behave in the future. So I see this as a start but I want more!

    I also think the 2nd and following paras of this letter say what Ms. McCleary should have said in the first place when asked about PACE. They do not reference the study specifically but talk about PEM. I don't expect her to comment on a study she hadn't read thorougly yet at the time of comment but a skilled communicator might have switched the topic to findings/ PEM in ME/CFS rather than what the person asked.

    I think it is expecting too much for the average person with ME/CFS to write a *scientific* letter to a medical journal but I would still encourage people to try as you have a perspective on illness that the professionals don't and I have seen journals publish letters from people or caregivers/ family of people with an illness. Don't count yourself out so easily; let the editors see what you write and let them decide whether your letter is worth publishing! Even if your letter isn't published, you might be able to change/ affect some minds behind the editorial desk. But you won't know unless you try.

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