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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Lucibee

    Lancet - editorial - 'a proper place for retraction'.

    So.... I appealed (because their Journal Publishing Agreement is extremely unclear and frankly contradictory), and I have been "allowed" to put the accepted version on my blog. So I'll update this post when I've done that. I've now done that...
  2. Lucibee

    Lancet - editorial - 'a proper place for retraction'.

    Aaaannnnnd.... I've been embargoed until 20 Sept. Well, that was predictable!
  3. Lucibee

    Lancet - editorial - 'a proper place for retraction'.

    Not excluded, as such, but due to the sheer volume of material The Lancet receives, editors are assigned to certain areas of interest. As a former correspondence copyeditor (ie, fairly junior), I would only ever see letters that had been accepted - but never thought to ask to see what had been...
  4. Lucibee

    Lancet - editorial - 'a proper place for retraction'.

    But how do you do that when they won't listen to one side for fear of being 'influenced'?
  5. Lucibee

    Lancet - editorial - 'a proper place for retraction'.

    It would definitely make a difference. But I don't know how one would go about that. The need for The Lancet to remain 'impartial' means that resistance to influence leads to not hearing whole sides of the debate - and that's a problem.
  6. Lucibee

    Lancet - editorial - 'a proper place for retraction'.

    Once it's been accepted (which it has), it's fine. But I'm going to wait anyway. The issue about prior publication is more about the journal stepping on the toes of another publisher when they claim copyright of an article. In the case of comment, I guess they will want to ensure that I don't...
  7. Lucibee

    Lancet - editorial - 'a proper place for retraction'.

    Sorry if that seems cryptic - but I'll explain more once this plays out. Ha! Yes. There are no conspiracies, just incompetencies. But both sides see conspiracies on the other side. I don't think it's malicious; more misunderstanding. Which is why I wish they'd actually talk to some pwME.
  8. Lucibee

    Lancet - editorial - 'a proper place for retraction'.

    Ah - I took gratuitous to mean 'done without good reason'. That the editorial doesn't really stand alone if you remove the paragraph on PACE, tells you all you need to know. Or not. I'm trying to work out whether TLID want to discuss PACE because they realise what is actually going on (and are...
  9. Lucibee

    Lancet - editorial - 'a proper place for retraction'.

    I don't think it was gratuitous. The editorial itself didn't make sense by concentrating just on DAAs in HCV. After all, what 'cherished preconceptions' could possibly be challenged by a Cochrane review that could ultimately lead to life-saving drugs being withdrawn for 'not being effective...
  10. Lucibee

    Lancet - editorial - 'a proper place for retraction'.

    I will when I get a link.
  11. Lucibee

    Lancet - editorial - 'a proper place for retraction'.

    Just to let you know, I've had a letter accepted on this. TLID (The Lancet Infectious Diseases) seem to be keen to rush it through. I'm not sure yet whether I'm being fed to the lions or they really are up for a genuine debate. Has anyone had anything accepted about GETSET yet?
  12. Lucibee

    Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME)

    I very much doubt they collected data on drop-outs so an FOIA request is unlikely to yield any results. I'd be more interested to know, of those who completed tx, how many were asked to join study, how many were phoned (screened?), was it the pt or the PI who determined at that point who would...
  13. Lucibee

    The PRINCE Secondary Study: Persistent Physical Symptoms Reduction Intervention (CBT trial)

    Missing More: After Research Trial (ie, PRINCE secondary trial) This makes me really quite cross :(
  14. Lucibee

    Persistent Physical Symptoms Reduction INtervention: a System Change & Evaluation (PRINCE Primary)

    Missing More: After Research Trial (ie, PRINCE secondary trial) This makes me really quite cross :(
  15. Lucibee

    Crawley: How to deal with anti-science BRS2017

    I can only guess that EC was invited to speak at BRS2017 because of her involvement in research that uses exercise therapy to treat fatigue. This also seems to be gaining popularity in CKD too - and may well benefit patients. Again, I can only presume that they are expecting some sort of...
  16. Lucibee

    An open letter to Psychological Medicine, again! by D Tuller et al

    My latest point was about the CFQ's use as part of the recovery criteria. In essence, it already contains its own measure of recovery, because it asks you to compare yourself "to how you felt when you were last well", so a score of 11 or less (out of 33) should be enough to indicate "recovery"...
  17. Lucibee

    An open letter to Psychological Medicine, again! by D Tuller et al

    I should have added that the only tool a statistician should use on the CFQ is a sharp stick.
  18. Lucibee

    An open letter to Psychological Medicine, again! by D Tuller et al

    I've had a go at unpicking the CFQ on my blog. First, the fact that it logs change and not absolute values of anything, and that its use as a repeated measures instrument could lead to confusion (it certainly did me)...
  19. Lucibee

    Book out now 'Science, Politics, .......and ME' by Ian Gibson and Elaine Sherriffs

    As a relative newcomer to ME/CFS, I was keen to see what Ian Gibson had to say, particularly from a political standpoint, so I bought the book as soon as it came out. Oh my! As an editor, my heart sank. I nearly cried. There are so many things wrong with the book that I don't know where to...
  20. Lucibee

    Psychogenic explanation of physical illness: time to examine the evidence

    The paper does now seem to have been published: https://www.ncbi.nlm.nih.gov/pubmed/27694458
  21. Lucibee

    ****** !!!!!!!! ****************!!!!!!!!!!!!!!!! Junior version of PACE funded PI Dr Crawley

    According to the ISRCTN registry, the trial ended on 31 Aug 2016. Looks like they waited until the trial was pretty much over before they published the protocol.
  22. Lucibee

    The Real ME: A Stock Photography Resource for the Media

    OK. Let's see if this works... <strong>Stock photography</strong> The stock-library photographs below are appropriate images to represent people with ME/CFS in the media. <strong>Woman lying in bed</strong> iStock <a...
  23. Lucibee

    The Real ME: A Stock Photography Resource for the Media

    As I said, I don't want to create more work for anyone by doing this, so I'm happy to do any editing needed (if I can obtain the necessary permissions). If that's not OK, then I can upload them in a format that will allow an easy copy and paste. I have now worked out how to get it into...
  24. Lucibee

    The Real ME: A Stock Photography Resource for the Media

    @Sasha Hope you don't mind, but I've downloaded and edited the Stockphoto list with updated/corrected links, if that's of use. Shall I upload it here or send to you direct?
  25. Lucibee

    "My thoughts about the PACE trial" (January 27) (Lucibee's Blog)

    Sorry about that. I've had a fiddle with the settings, so hopefully it will work now?
  26. Lucibee

    "My thoughts about the PACE trial" (January 27) (Lucibee's Blog)

    Thanks, Purple, I am aware of that, but I felt that the issue had been adequately covered by others elsewhere in relation to the later trial updates.