• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. jodie100

    Trial by Error continued is PACE a case of research misconduct

    That would be my comment although it's not showing at all for me. I did post it a second time yesterday morning after I noticed Saturday's post had disappeared as I thought it was a software glitch, so that would probably explain why it is showing up twice. I don't know why some people can see...
  2. jodie100

    Trial by Error continued is PACE a case of research misconduct

    Thanks, that was exactly the point I was trying to make about Tuller bringing the term "research misconduct" into his discussion . I also don't like to see patients given the wrong information from somebody they would assume was speaking from a position of knowledge, and the economics part of...
  3. jodie100

    Trial by Error continued is PACE a case of research misconduct

    @TiredSam I am afraid you have misread my comment. What it is intended to say is some people are distressed or vulnerable , some M.E. activism( referring to the activism style, not individuals) including from people without M.E. is aggressive or ill-informed. It is obviously not trying to...
  4. jodie100

    Trial by Error continued is PACE a case of research misconduct

    I am critical of quite a lot of PACE- the fear avoidance theory, the implication that there is nothing physically wrong, the media spin, the failure to fully acknowledge the potential for harm if incorrectly advised, inadequate respect for patients' autonomy etc.. (eta But I am also critical of...
  5. jodie100

    Trial by Error continued is PACE a case of research misconduct

    I am afraid that that article has multiple problems. I posted a critical comment on the Virology blog but it seems to have disappeared. It mainly concerned errors in his discussion of the Plos One economics Paper. This is the comment I posted: "If you cannot back up a claim of research...
  6. jodie100

    Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Crawley

    From Q. 9 in the MEGA Q & A http://www.megaresearch.me.uk/qanda/ "Patients with ME/CFS will be identified by clinicians in the NHS clinics which use NICE guidance to determine if patients have ME/CFS. This means patients with other causes of fatigue will not be recruited including, for example...
  7. jodie100

    Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Crawley

    No. I am a long term severe M.E. sufferer, and I just think that the current situation is untenable for M.E. patients and that the best hope of changing it is the MEGA study. I don't expect one study to be perfect or resolve everything, but it could lead to major increases in understanding what...
  8. jodie100

    Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Crawley

    @JaimeS as a follow up to my post yesterday, I suppose the real problem is the lack of patient trust arising from PACE, not anything that is intrinsic to the MEGA study itself. MEGA plan on selecting patients based on the NICE NHS criteria, and all need to have PEM, which will be defined in...
  9. jodie100

    Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Crawley

    I think this is the case based on this answer from Q &A, question no.3 on the MEGA website "The Patient Advisory Group will decide how best to identify and define post-exertional malaise and work with the specialists on the Scientific Team to hone this definition." I will try to come back to...
  10. jodie100

    Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Crawley

    I think MEGA will be different to past studies and will take patients' concerns into account: 1.as regards patient selection they are only going to include patients who have post exertional malaise( and I think the patient advisory group will have some say in defining this appropriately) in the...
  11. jodie100

    Trial By Error, Continued: The CMRC Affirms Full Support for Libelous Crawley

    MEGA is definitely not BPS. If you look at their website you will see that they say it is a biological study and that "the MEGA consortium has brought together many experts from a wide range of different disciplines across genetics, genomics, metabolomics, pain research, proteomics, psychiatry...
  12. jodie100

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

    That's surprising, although the number is still very small in comparison to the number of participants overall. I am surprised there were any though .Is there any explanation for this? Is it that their fatigue was much improved despite worse physical function, or something else?
  13. jodie100

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

    Thanks for the replies, Esther12 and others. I am still not sure if I understand the issue correctly or not. I wonder if the following reasoning is correct: Only patients with both fatigue and physical function in the normal range were considered in the composite assessment of recovery at the...
  14. jodie100

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

    I was wondering if the investigators are correct here as I cannot see any issue with their argument or am I missing something? From the New York Times article: "The investigators had weakened their outcome measures from their trial protocol so much that participants could actually deteriorate...
  15. jodie100

    Williams, White et al: PACE: Heterogeneity in CFS - empirically defined subgroups [...]

    I have only read the abstract as when I try to get to the article it says "Page not found". I wonder are they saying that only a subgroup of 11% of participants are avoidant-inactive? If so , then the results of the trial have been very poorly communicated.
  16. jodie100

    Comment by 'jodie100' in 'For two hours only'

    Brilliant writing, it captures the essence of living with M.E. and trying to socialise so vividly.
    • jodie100
    • Blog entry comment
  17. jodie100

    Has anyone seen Dr Bansal or Dr Chaudhuri (UK)?

    Hi, I haven't seen either of those doctors but there is an article here by Dr. Bansal that might give some idea of his approach and other things he checks for http://bmcfampract.biomedcentral.com/articles/10.1186/s12875-016-0493-0 It is a bit surprising that your doctor doesn't seem to be...
  18. jodie100

    Petition: Opposing MEGA

    Hi, TreePerson, I have linked to the articles I was referring to below. They are to do with symptom-based phenotypes, which I would hope might provide a useful starting point for further analysis or genetic findings or the development of subgroups of patients. The biography for Professor...
  19. jodie100

    Petition: Opposing MEGA

    Although I may be in the minority on this forum I think the MEGA study has a lot of potential to help M.E. patients, as long as patient selection criteria, co-morbidities and exclusion criteria are properly defined. If it could find biomarkers that are diagnostic for M.E. and split people with...
  20. jodie100

    New MEGA study website (30 November 2016)

    Deadline for applications to join the MEGA project Patient Advisory Group extended to 9am 13 December 2016 -
  21. jodie100

    New MEGA study website (30 November 2016)

    In a post from Dr. Charles Shepherd on Page 1 of this thread it says "(please note that AfME are administering the applications but are not involved in the selection process)". The selection process seems to be by the panel mentioned above by scoring applicants against the criteria they have...
  22. jodie100

    New MEGA study website (30 November 2016)

    Yes, I saw that the application forms were to be returned to Afme, but I assume that they will not be involved in assessing the applicants based on what the MEGA website says, and that they are just a collection point for the forms. That's how I understood it but I am not sure.
  23. jodie100

    New MEGA study website (30 November 2016)

    I think you may be mistaken about Afme's involvement or there are crossed wires some place. This is what the MEGA site says on the Get Involved page: "Applications will be considered by a panel consisting of representatives from the ME Association and ME Research UK and a representative from the...
  24. jodie100

    Private Eye - ME Cluster Bomb

    I think it's a really good article. It does acknowledge that CBT itself isn't a cure and that some patients are "simply unable to increase activity and exercise levels, and some are made worse by trying", and refers to the "enduring sleight that it's "all in the mind" or due to "faulty beliefs.""
  25. jodie100

    The faculty Lounge. The PACE study: Open access and conflicts of interest

    The same comments from SW and S Lubet are still showing among the comments below the article on this page. http://www.thefacultylounge.org/2016/11/an-open-letter-to-dr-simon-wessely-defender-of-the-pace-study.html
  26. jodie100

    The faculty Lounge. The PACE study: Open access and conflicts of interest

    Could somebody please point me to where SW's comment is as I haven't noticed it and would be interested in reading it ? Thanks
  27. jodie100

    Radio on ME/CFS Sat 5th Nov 9-10amGMT

    Is there any evidence that diagnosing children with Pervasive Refusal Syndrome is a regular occurrence, and not only isolated cases? (Obviously no details of individual cases should be discussed here) If there is, could somebody give me details of where to find it, please?
  28. jodie100

    E. Crawley: Time to end the damaging battle over chronic fatigue syndrome

    There are actually a lot of good things in this article compared to the typical media articles - the acknowledgments of the following: - that CFS/M.E. is not a single illness -that we do not know much about it -that it differs in children and adults -that treatments don't work for everybody...
  29. jodie100

    Petition: Opposing MEGA

    @Jonathan Edwards If the Mega study is going to try and subgroup the CFS patients selected, would it matter even if one subgroup turned out to have a genetic marker for hypochondriasis ( although in that case they would have been misdiagnosed and not have CFS)? Would this not result in being...
  30. jodie100

    Petition: Opposing MEGA

    Ironically ( and just as an example of how the whole debate seems to have become overly polarised) they were not by anybody you might initially think but by Dr. Leonard Jason (and others), who seems to be favourably regarded in the M.E. community generally. e.g. one of Dr Jason's studies...