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A personal letter to the NIH team researching ME/CFS about their PEM study, 2020

Discussion in 'Open Letters and Replies' started by Trish, Oct 6, 2020.

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  1. Trish

    Trish Moderator Staff Member

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    I have spent some time (probably far too much for my health) drafting and redrafting this letter with some helpful suggestions from members on a members only thread:
    https://www.s4me.info/threads/draft-letter-to-the-authors-of-the-nih-pem-study-2020.17052/
    The letter refers to a paper discussed here:
    https://www.s4me.info/threads/chara...ronic-fatigue-syndrome-2020-nath-et-al.16927/
    The letter was also signed by 8 other forum members from 4 countries who asked for their names to be added in support.

    I am posting the final version (almost exactly the same as the version on that drafting thread) here to make it public, and will post any reply I receive here.

     
    Cheshire, Perrier, leokitten and 53 others like this.
  2. Trish

    Trish Moderator Staff Member

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    I ended up sending it as a Word document attachment as I couldn't figure out how to sort out the layout when I tried copying and pasting into the body of the email from my document, so I wrote this short email message with the attachment:

     
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  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Well done and thank you.
     
    Forbin, Barry, SedulousSloth and 20 others like this.
  4. cassava7

    cassava7 Senior Member (Voting Rights)

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    @Trish, as someone who commented positively on the NIH study in the original thread, I'd like to thank you deeply for explaining the differences between fatiguability and PEM in so much details.

    I have mild (mild-to-moderate?) ME with which I persistently experience fatiguability as you describe it, but I rarely have PEM thanks to pacing and a "high" "baseline" to begin with. It does feel exactly like being down with an infection which, as you point out, the paper fails to mention. Someone else called it a "sui generis" process rather than being only an exacerbation of symptoms -- I very much agree with that.

    Your letter certainly is a helpful resource to anyone, besides the NIH team, for actually understanding PEM. As it took a vast amount of energy for you to write it, I hope you're not crashing excessively and I wish you a recovery as gentle as possible.
     
    Cheshire, sea, Amw66 and 19 others like this.
  5. alktipping

    alktipping Senior Member (Voting Rights)

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    i know this took a lot of time and effort on your part Trish . thank you for sticking with it and i hope the personal cost to you are short lived take it easy for a bit .
     
    Barry, Alton, Mij and 17 others like this.
  6. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Thanks Trish, your explanation of the difference has clarified further my thoughts on the subject. To my mind now, fatigability, for me at least, is a potential precursor to PEM. If I treat it seriously, stop what I'm doing and then rest, I stand a good chance of avoiding PEM - if I don't stop and I attempt to keep going then the chances of PEM increase dramatically.

    I think it is especially relevant in relation to mild ME folks, who perhaps may be resilient enough that day-to-day activities only trigger the fatigability and they are able to recover before PEM sets in - unless they push themselves over and above what is normal, or they keep that state up for too long (and who knows how long too long is). Of course this is only my interpretation based on my experiences, so it wouldn't be surprising if other people didn't identify with what I've written.
     
    oldtimer, Barry, EzzieD and 16 others like this.
  7. Trish

    Trish Moderator Staff Member

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    Here's the reply:

    Dear Trish Davis et al.,


    Thank you for your thoughtful letter regarding our recent publication “Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” published in Frontiers in Neurology. We have read and discussed your letter. We especially appreciate the personal nature of your letter and the importance of research reflecting the lived experiences of individuals with ME/CFS.


    We agree that our paper has its limitations. It does not capture the entire experience of PEM and may not be salient to all individuals with ME/CFS. With listening to and analyzing nearly 20 hours of recorded conversations with ME/CFS patients in the United States, we heard first-hand the devastating toll PEM has taken on the lives of ME/CFS patients. Our hope was to accurately reflect the honest and personal conversations that took place with the 43 patients in our study. Undeniably, there is much more work that needs to be done and our findings surely do not capture all patients with ME/CFS. We look forward to furthering this discussion with the ME/CFS patient community.


    Very kind regards,


    Barbara Stussman and Brian Walitt
     
  8. Trish

    Trish Moderator Staff Member

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    Oh well. I tried. I guess I didn't really expect them to engage with me on the specific points I raised. At least they read it and might remember some of it next time they think about ME/CFS.
     
    Cheshire, Perrier, Sean and 28 others like this.
  9. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I would maybe clarify that your point wasn't just that it didn't reflect all patients (what research does, really?), but that by conflating two things it makes it harder to determine what either of them are accurately.
     
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  10. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Reminds me of those letters you get in reply when you ask a politician a question in writing.
     
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  11. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Hope I'm not saying the wrong thing here but "listening to and analyzing nearly 20 hours of recorded conversations with ME/CFS patients" and "honest and personal conversations that took place with the 43 patients in our study" --- seems a pretty thin evidence base.
    Holy s--t they published in Frontiers in Neurology --- with a title like that you'd expect more.
     
  12. shak8

    shak8 Senior Member (Voting Rights)

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    Such a great letter, Trish. Thanks for your work and writing skills, tops!
     
  13. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    Wow Trish! I was pretty happy with this paper, but you have made some excellent points! At the moment I am mild and experience very little PEM, due to very strict pacing. Your separation between fatiguability and PEM is spot on!
     
    ladycatlover, Amw66, sebaaa and 8 others like this.
  14. Woolie

    Woolie Senior Member

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    Not my feeling about the frontiers journals. They're respectable, but in my field, they are second tier - you publish in them stuff that might not have made the cut in the five star journals.
     
  15. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I'm glad to know there are still five star journals. It's been my observation from seeing all the many places the BPS delusional research gets printed that everyone in science medicine publishing is in a very competitive race to the bottom.
     
  16. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Code:
    https://twitter.com/MillionsMissgFr/status/1324830853009203203
     
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  17. Trish

    Trish Moderator Staff Member

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    I find it completely bizarre that they describe this as important research that identified differences in PEM especially after exercise for the first time.

    What do they think ME organisations have been helping patients understand about their symptoms, pacing to avoid PEM have been doing? What do they think Workwell have been doing?

    What planet has Wallitt been on all this time while doing the NIH study. How did he diagnose people with ME if he didn't know what PEM is and what effect exercise has on symptoms?

    And they got it wrong.

    Edit: spelling.
     
    Last edited: Nov 6, 2020
  18. rvallee

    rvallee Senior Member (Voting Rights)

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    I have only one question: where's the rest? Hell, where's all of it? Is that it? There should should be 100x more than this. This is all they have? After all this time? 23 patients and a Master's level paper?

    WHERE IS THE REST?! Has the money been diverted again? Where is the rest of funding? Is there even one person working full time on this yet? Or is everyone still part time?

    Where's the damn money, Lebowski?
     
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  19. Barry

    Barry Senior Member (Voting Rights)

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    That chimes with what I see with my wife.
     
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  20. Mij

    Mij Senior Member (Voting Rights)

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    I can identify with this when describing pacing and PEM prevention, but would not describe it as "mild ME'. I wish we could get away from labeling ME as 'mild, moderate and severe' when describing PEM. It gives the impression that we are only 'mildly' affected. When PEM occurs, my symptoms are just severe as everyone else. Perhaps the only difference is that I'll recover faster.
     

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