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Mark Edwards: What relationship do stressful life events, neglect & abuse have with functional neurological disorder (conversion disorder)?

Discussion in 'Health News and Research unrelated to ME/CFS' started by Cheshire, Mar 9, 2018.

  1. Cheshire

    Cheshire Moderator Staff Member

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    https://www.nationalelfservice.net/...al-neurological-disorder-conversion-disorder/

    Reminder: Mark Edwards is leading an imaging study on ME/CFS to see if a common mecanism can be found with Functional neurological disorder.
    He has also (successfuly) promoted the idea (with Jon Stone) that psychological symptoms should be withdrown from the requirement of FND in DSM 5, making it the one and only psychiatric diagnosis without any psychiatric symptoms (while at the same time vague symptoms were added to the definition of somatic stress disorder (not sure of the name here).
     
    Last edited: Mar 9, 2018
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  2. Nancy Blackett

    Nancy Blackett Established Member (Voting Rights)

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  3. Woolie

    Woolie Senior Member

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    Do you have a link to the article, @Cheshire?
     
    Last edited: Mar 9, 2018
    Luther Blissett and Louie41 like this.
  4. Cheshire

    Cheshire Moderator Staff Member

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    Oups... sorry (added to my previous post)
     
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  5. Londinium

    Londinium Senior Member (Voting Rights)

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    On the DSM 5 piece I have some major concerns:

    So one has the scenario where a patient isn't suffering from depression, anxiety or some other psychological condition. But the neurologist also cannot find a cause for their symptoms. That is a real problem and I agree that bouncing between the two specialities helps nobody. However, I don't believe the solution is simply to say 'meh, default them to the shrink then.' There doesn't seem to be any consideration of (a) whether to re-consider a differential diagnosis (ME/CFS aside, I'd want to be 500% sure something autoimmune was ruled out here given how hard it is to diagnose in many cases; nor (b) that perhaps it is the psychiatrist who is right here (!) and not the neurologist. The default seems to be if the neurologist cannot find anything from their tests then it is psychiatry that is wrong and the patient must be mentally unwell.
     
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  6. Amw66

    Amw66 Senior Member (Voting Rights)

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    Good luck accessing anything other than standard testing.
     
  7. NelliePledge

    NelliePledge Moderator Staff Member

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    Odd that there is very little information on the site other than links out to news on other sites. i couldn’t see anything that says who’s site it is or their story where in the U.K. they are. Also they have page asking for fundraising. The stuff about ME seems to be ok anti GET article for eg and stuff saying it isn’t Psychological but using FND........
     
  8. Nancy Blackett

    Nancy Blackett Established Member (Voting Rights)

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    From the FiND ME Twitter page, January 2017, it says the site owners are Andy Bristow and Lewis Henshall. They say they will launch a campaign on FND. That was January 2017. There is a FB Page too.

    The site name FiND ME sounds like its about finding ME, but stands for FND/ME.
     
    Last edited: Mar 9, 2018
  9. JemPD

    JemPD Senior Member (Voting Rights)

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    Regarding the article in the OP... unless the control group is made up of people who have another disease, i dont care which, but any chronic disease (pref neuro/autoimmune), then the results of studies into adverse life events & their correlation/association with any disease/condition are utterly unreliable. It seems well indicated that adverse life events increase likelihood of illness. Fullstop. So without controls for other illnesses there is no way of knowing whether the correlation is with FND, or indeed with ME as they so often like to say, or actually just with illness itself.

    Lets have a study of the prevalence of childhood trauma in say, ME/CFS, FND, MS, RA, Lupus, Mitochondrial Disease, & cancer. and we'll see. It's my very strong suspicion that rates will be the same.

    Edited : for sense
     
  10. JemPD

    JemPD Senior Member (Voting Rights)

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    They seem to not know the difference between FND & ME, they list them all as the same thing & yet repeatedly use the word 'and' when describing them - ie "FND and ME". so, do they believe they are the same thing, or different. I agree with @adambeyoncelowe it looks like astroturfing. Or something done by people who are well meaning but dont really know what theyre on about.
    I'm so fed up with people setting up websites to educate & raise awareness, who dont have their facts straight.:banghead:
     
  11. Allele

    Allele Senior Member (Voting Rights)

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    I really need to know what adverse childhood events caused these peoples' professional sociopathy.
     
  12. Esther12

    Esther12 Senior Member (Voting Rights)

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    When the blog said "studies with arguably more rigorous methods of life events ascertainment, a higher rate of adverse life events prior to onset of symptoms was found" I'd assumed it meant more objective measures of adverse life events, or prospective studies.

    But the papers abstract says:

    "An association with stressful life events preceding onset (OR 2·8, 95% CI 1·4–6·0) was stronger in studies with better methods (interviews; 4·3, 1·4–13·2)."

    I'd have assumed interviews might have a higher risk of bias than questionnaires. I've only read the abstract, not the paper.
     
  13. Seven

    Seven Senior Member (Voting Rights)

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    This guy has to be stopped in his track sooner rather than later.
     
  14. strategist

    strategist Senior Member (Voting Rights)

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    An interview allows the interviewer to introduce their own bias.
     
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  15. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    Interestingly, the Internet domain is registered to an individual, giving a residential address and not hidden from view like the s4me domain is.

    I would guess either a small scale business operation, or an individual effort.
     
  16. Amw66

    Amw66 Senior Member (Voting Rights)

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    Coyne has a few good tweets re ACE definitions, prevalence and basic crap methodology
     
  17. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I thought I would post the following to some thread on Mark Edwards. Wasn't sure what the best one is but this one came up in a search.
    He is now working in a private clinic in Ireland:
    https://www.hermitageclinic.ie/consultants/consultant-directory/dr-mark-edwards/
    It could well be the case that he is only here for a day or two a week. It will be interesting to see how things work out. One person has just praised him on an Irish forum I'm on.
     
  18. Mithriel

    Mithriel Senior Member (Voting Rights)

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    There appears to have been a lot of work done on making the diagnosis of FND palatable to patients and it has paid off. It is not unusual on forums nowadays to have patients saying they have finally found out what is wrong with them - FND which is a real disease where the hardware is intact but the software doesn't work.

    They are so happy it is hard to know what to say. Personally, I would feel foolish if no one told me that FND was another way of saying hysteria when I finally found out but I do not want to make anyone feel bad or forced off a forum.

    It is a situation we should not have to face and I resent it very much.
     
  19. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Perhaps there is an opportunity to create a document which uses FND own words but in a way that explains plainly what it is they are meaning and the document could be widely available through various online media.

    I would say this might be a job where S4ME could contribute but that those carrying the bulk of the work could be from something like CBT watch or even Brian Hughes or (really not good at remembering who might be helpful here). No doubt David Tuller's work would be a good reference.

    I really think that this specifically (that FND and it's hardware / software explanation) needs to have exposure to the light of critical review. I can understand why it would be accepted uncritically by people who have been medically marginalised. It's horrifying to know that this is just more medical gas-lighting of this illness population. Eventually the penny will drop for some of these people. And harm will have been done.

    Anyway, I don't think I'm explaining myself particularly well but having FND more fully explained in a few succinct paragraphs would be really useful for people being given this diagnosis.
     
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  20. dave30th

    dave30th Senior Member (Voting Rights)

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    They themselves--Jon Stone etc--have published papers saying it's clear there are also "hardware" differences but they refuse to update the analogy. It's bizarre. And they have been arguing that the structural change associations are actually the downstream result of the functional differences. I wrote about this at some point earlier this year.
     
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