Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

MEGA Questions and Answers: Latest Petition update

Discussion in 'General ME/CFS News' started by aimossy, Oct 5, 2016.

  1. aimossy

    aimossy Senior Member

    Messages:
    1,096
    Likes:
    3,791
    From the link:

    "Petition update

    MEGA Questions and Answers
    M.E./CFS Epidemiology and Genomics Alliance (MEGA)
    United Kingdom
    Oct 5, 2016 — Many of you have asked us questions about MEGA. We have not yet applied for funding and the patient advisory groups have not yet met to provide advice. So these are our preliminary thoughts at the moment. Some of this will change as we work on the first application (see below) and during consultations prior to future applications. We want to engage with as many people as possible especially in the current planning phase."

    https://www.change.org/p/support-th...k&utm_source=petition_update&utm_medium=email
     
    Last edited: Oct 5, 2016
    Woolie, Susanna D, JohnCB and 4 others like this.
  2. Glycon

    Glycon World's Most Dangerous Hand Puppet

    Messages:
    301
    Likes:
    479
    ON, Canada
    Except the problem is not the involvement of psychiatrists, but the involvement of specific psychiatrists associated with discredited, probably dangerous, and possibly fraudulent research into ME/CFS.
     
    Woolie, moosie, justy and 20 others like this.
  3. Cheesus

    Cheesus Senior Member

    Messages:
    1,244
    Likes:
    5,577
    UK
    I'm in favour of much of the information they have supplied here - particularly that the data will be open access and that they are recording which set of diagnostic criteria each patient meets. The former is hugely important for transparency and the latter for determining the veracity of existing criteria and ultimately determining subgroups.

    However I think it is a little disingenuous to say they need paychiatry to be there simply to ensure there are a broad section of specialities represented. As there are resource constraints I think they need a better justification of the presence of psychiatry if they are going to allocate said resources towards psychiatry. The justification here seems to be "Well we thought it would be nice to have a full set", regardless of the fact that there are a number of specialities absent (not least neurology and immunology).
     
    Last edited: Oct 5, 2016
  4. AndyPR

    AndyPR Senior Member

    This is all of it.

     
    Simon, aimossy and TiredSam like this.
  5. AndyPR

    AndyPR Senior Member

    Nope, that's not what they say. They say each patient will have to consent for data release and then data will only be released to 'researchers'.
     
  6. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,823
    That wasn't the question. The question is why are people who believe ME is a psychosomatic or other psychiatric disorder involved in this biomedical research. Replacing real questions with easier to answer fake ones is not acceptable. They are either not listening or they are not willing to give a straight answer.
     
  7. aimossy

    aimossy Senior Member

    Messages:
    1,096
    Likes:
    3,791
    Pleased you put it all up there @AndyPR I was just thinking the whole thing needs to be put up.
     
    Susanna D, MEMum and AndyPR like this.
  8. aimossy

    aimossy Senior Member

    Messages:
    1,096
    Likes:
    3,791
    "Patients with CFS/ME will be identified by clinicians in the NHS clinics. The clinicians will be asked to identify patients they judge from NICE criteria to have CFS/ME. This means patients with other causes of fatigue will not be recruited including (for example): those with thyroid disease, diabetes or depression that is sufficiently severe to explain their fatigue. Patients will have been examined, a full history taken and they will have had screening blood tests (to ensure other causes of fatigue have been excluded)."

    Who are these clinicians - it's their judgement or using the NICE criteria to characterise?
    Will they have to adhere to strict guidance of NICE criteria in referring people for the study?

    What about the fact that some clinicians see a broad church that includes, to quote someone else "fifty shades of fatigue" and somatisation among other tack on psychiatric elements.

    Does anyone know where to google to get a link to the NICE criteria? I can't remember if they have PEM in there or if it is described well.

    To be clear I am not anti the fact that you can have ME/CFS alongside psychiatric conditions, but don't we need to have well characterised cohorts too?

    Using this research to figure out criteria could be brilliant if this is done well!
     
    Last edited: Oct 5, 2016
    justy, MEMum and trishrhymes like this.
  9. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,153
    Likes:
    17,872
    It's rather slight but it's a start. You can put up comments, which I assume will be read. I've just done so.
     
    TiredSam and MEMum like this.
  10. AndyPR

    AndyPR Senior Member

    TiredSam, Simon and aimossy like this.
  11. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,823
    There's nothing strict in NICE. It recommends "considering" ME as a diagnosis if post-exertional something (malaise or fatigue) and other symptoms are present, but worsening symptoms in response to exertion are an additional optional symptom.

    If there's no PEM, doctors should merely reconsider the diagnosis.

    If there are neurological or cardiac symptoms, or swollen lymph nodes, alternative diagnoses should be considered. Which is a great way to exclude actual ME patients if so desired.

    Actual NICE text:
    These are clinical criteria, and far too vague and broad for meaningful research.
     
  12. Wildcat

    Wildcat

    Messages:
    1,424
    Likes:
    3,663
    .
    When the NICE Guidelines were published 2007, all charities and local ME groups, with the exception of three, declared the Guideline Unfit for Purpose. The charities which did not reject NICE were AFME, AYME and the Sussex CFS Society (closely allied with AFME and AYME).

    At this stage why is NICE considered suitable for patient selection for such a study as MEGA.

    NICE for ME is long overdue for revision.

    .
     
    Last edited: Oct 5, 2016
  13. snowathlete

    snowathlete

    Messages:
    3,312
    Likes:
    14,618
    UK
    Exactly. This stinks of conversations behind the scenes where certain people have said, "some patients are just against psychiatry because they think it means we're saying they have a psychological illness. But obviously we aren't saying that at all...blah blah blah." They do this, we've seen it before. Portray patients as mental health biggots so people don't actually listen to the reasonable and relevant points that patients are really making.

    The problem is the people involved and their beliefs and actions. If a person is from another discipline but does the same things as White and Crawley do that would be just as much of a problem.

    I do question this though:
    Really? Why? What exactly is the justification for that statement? This is more of the kind of thing which we do not want. We want evidence based decisions, evidence based design and thinking. Not fluff that has no meaning and doesn't stand up to scrutiny. This is supposed to be an omics study for crying out loud.
     
  14. MEMum

    MEMum Senior Member

    Messages:
    413
    Likes:
    2,130
    How is this going to link in with the UK Biobank started at the London School of Tropical Medicine?
    Charles Shepherd or the Prof will know more re this, sorry don't seem to be able to get the right tags.
     
  15. snowathlete

    snowathlete

    Messages:
    3,312
    Likes:
    14,618
    UK
    Funny double standard too. When White or Crawley do a study they don't include other disciplines for completeness. Rather they only involve a rather narrow set of disciplines, made up of people who share the same beliefs as them about the disease being a behavioural disorder. So why after decades of behavioural study after behavioural study like that, should they be included in an omics study?
     
  16. AndyPR

    AndyPR Senior Member

    AFAIK it won't but I could be wrong.
     
  17. Glycon

    Glycon World's Most Dangerous Hand Puppet

    Messages:
    301
    Likes:
    479
    ON, Canada
    Psychiatry is very much needed because of the nature of the symptoms. This is especially true given the criteria that are going to be used to recruit patients for this study. Sure ME/CFS isn't a psychiatric illness. But many people will be recruited into the study who do not have ME/CFS.

    What is needed is GOOD psychiatry. The kind most people with ME have not had the opportunity to experience.
     
    Sidereal and aimossy like this.
  18. snowathlete

    snowathlete

    Messages:
    3,312
    Likes:
    14,618
    UK
    No doubt Crawley and White have recommended crap like the
    Chalder Fatigue Scale, GAD7, etc.
     
    Boronia, Hutan, Cornishbird and 2 others like this.
  19. aimossy

    aimossy Senior Member

    Messages:
    1,096
    Likes:
    3,791
    I hope some more major science people weigh in.

    Honestly, I'm not sure how I feel about some things but there does seem to be a lot to like in this project in my view.

    I would like to know more specifics re recruitment and exclusion.
     
  20. AndyPR

    AndyPR Senior Member

    Which isn't what they quote here
     

See more popular forum discussions.

Share This Page