A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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Clinical Trial at Brighton/Sussex Hospital

Discussion in 'General ME/CFS Discussion' started by ChrisD, Sep 27, 2017.

  1. ChrisD

    ChrisD Senior Member

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    I am not sure if I should really discuss this openly here or not, please feel free to advise not to or delete this post if it is inappropriate in terms of the trial being confidential.

    Sussex ME and CFS association are running a study at the Royal Sussex hospital and Sussex university looking at understanding the biological mechanisms of CFS and Fibromyalgia. I would like to get involved for the sake of helping this thing progress and hopefully help make a small discovery but I have a few doubts.

    The study involves assessing POTS symptoms using a tilt table, encouraging inflammation in the blood stream and monitoring with brain scans and blood tests. (I can attach the information sheet if it is appropriate and am not breaching any privacy laws - that I may be already with this post).

    My doubts are whether their resources are developed enough to make significant discoveries that have not been made anyway by labs such as OMF and Montoya in America. Then, whether the data could just be collected to disprove any biological basis for ME and further prove the psychological angle (I know I'm a sceptic but who isn't in this dire situation?!)

    And probably my biggest doubt is that they will use a Typhoid vaccination to stimulate inflammation in the blood stream before monitoring the reaction. I spend a great deal of my life working extremely hard to lower inflammation through diet and supps etc. do I really want to raise it albeit temporarily? further to that, I am warned constantly about vaccines so is it even a good idea to receive one?
     
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  2. Dolphin

    Dolphin Senior Member

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    I have a recollection that Dr. Neil Harrison discusses planning to use a vaccination to look at the effects of inflammation in one of these videos. It might be of interest to you or others as I think he might be involved in this research.

    https://www.youtube.com/user/WetenschapvMEcvsVer/videos
     
    Last edited: Sep 27, 2017
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  3. A.B.

    A.B. Senior Member

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    I think one can safely say that this study won't be about finding biological mechanisms. It will be about propping up a psychosomatic narrative by claiming that brain abnormalities represent psychological abnormalities.

    I say this based on the following:

    - This organization has ties to PACE/CBT/GET proponents (Crawley, Pinching, Miller, maybe others). Some BACME connection as well (the organization that represents the interests of CBT/GET therapists and researchers).
    - It explicitly endorses a psychosomatic model of CFS.
    - Studying fibromyalgia and CFS together is in line with a psychosomatic agenda (they believe all functional somatic syndromes are the same disorder).

    Another hint that there is a problem is in the lack of information made available. There should be more than minimal information available for the public.

    @Woolie is our expert.

    I have seen that proponents of psychosomatic models lied to patients about the real purpose of the study before. This isn't paranoia.

    In my view this "patient organization" represents the interests of the BPS lobby and it is a mistake for patients to collaborate with them in any way.
     
    Last edited: Sep 27, 2017
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  4. ukxmrv

    ukxmrv Senior Member

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  5. Valentijn

    Valentijn Senior Member

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    I haven't seen any details about that study, which is pretty remarkable given the heavy advertising they're doing. So I'm assuming the worst.
     
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  6. ChrisD

    ChrisD Senior Member

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    So what I get from the Dr. Neil Harrison videos on Youtube @Dolphin is that he is quite focused on the biological underpinnings which is promising. @A.B. I had the same concerns for the same reasons and also I am just not convinced that they will be able to achieve more than US Labs, but then again Sussex has a very good reputation for sciences.

    My greatest worry is putting my health on the line through a Typhoid vaccine if the research is flawed and will not make any significant developments. @ukxmrv Yes the Sussex and Kent group, my experience with them before is that they are not at all open to discussing the science behind ME and are wholly focused on Psychosomatism, this is why this came as a surprise.

    I'm just going to go ahead and attach the details....

    I would love to ask Davis/Naviaux/Klimas/Hanson etc. if they would support this.
     

    Attached Files:

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  7. slysaint

    slysaint Senior Member

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    It's on their website:
    http://measussex.org.uk/fibromyalgia-research-september/

    it would appear not exactly to be about ME or Fibro but
    "understand the biological and physical mechanisms of chronic pain and fatigue"

    I agree with others, that anything this group (ie Colin Barton and Sussex ME and CFS association) are involved in should be viewed with a degree of suspicion.
     
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  8. AndyPR

    AndyPR Senior Member

    @ChrisD Whatever you decide to do (and I personally share the concerns already expressed by others), I'd like to say thanks for at least considering being involved in a study, and thanks for approaching it with an enquiring mind. :thumbsup:
     
  9. A.B.

    A.B. Senior Member

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    From the above document:
    Worrying.

    I can already imagine what kind of conclusion they want to make: that some psychological mechanism uncovered by this "attention and emotion processing" test is causing all the other symptoms (which includes not just pain, fatigue, mood, but also orthostatic intollerance and possibly exaggerated inflammatory reactions to the vaccine). A determined researcher can just torture the data until shows what they want.

    In other words this could be an attempt to modernize a psychosomatic model and considering the culture in the UK this is the most likely explanation.
     
    Last edited: Sep 27, 2017
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  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    @ChrisD Yes, I know Neil well. He is extremely bright and knows all the aspects of the problem. He is one of the best people in the UK interested in ME research. I think his technology and expertise are considerably ahead of anything in the US to be honest. This work is done in connection with some of the most innovative fMRI people in UK academia from outside of the ME field. this is exactly the sort of work we need. Neil is a psychiatrist but that should not put us off. He sees ME as a physical/physiological problem.

    The problem I foresee is that he is almost certainly using typhoid vaccination to stimulate a fever response. That makes a lot of people pretty unwell. I do not think we have any good evidence for it being dangerous in ME because I do not actually think there is any inflammation going on in ME but it might trigger a bad patch just like a 2 day CPET.

    I would strongly suggest volunteering but asking lots of questions before actually getting involved.
     
  11. A.B.

    A.B. Senior Member

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    The researchers mentioned in the socument:

    Kristy Themelis
    Recently published Investigating the effects of multisensory illusions on pain and body perception (sounds psycho-babble-y)

    Kevin Davies
    I could not find anything that made his position clear but he is clearly biologically oriented in other diseases.

    Jessica Eccles
    Has written on emotional processing affecting autonomic nervous system activity. Not entirely clear what her position is since this material is so vague but it doesn't sound good.

    They seem to be new to ME/CFS also. Davies has a previous interest in fibromyalgia.

    @Jonathan Edwards as far as I can see Neil Harrison isn't mentioned in relation to this study so maybe he is not involved at all (in case that was a major factor in shaping your opinion).
     
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  12. Valentijn

    Valentijn Senior Member

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    Dr Kristy Themelis looks like she's big into pain and sensations being illusory, and treatable with cognitive therapies. She's a psychologist with experience in physiotherapy.

    Dr Jessica Eccles combines backgrounds in Philosophy of Science and Psychiatry to psychologize physical symptoms, primarily those found in EDS.

    Professor Hugo D Critchley is a psychiatrist with an interest in abnormal human behavior and the mind-body connection. He teaches courses in psychosomatic medicine.

    Professor Kevin Davies generally does biological research as a rheumatologist, but seems to have an interest in Fibromyalgia as a stress response. At best he seems to be going for an honest central sensitization approach.

    http://jnnp.bmj.com/content/88/8/A21.1 is a Fibromyalgia study by 4 of the 6 researchers I've seen listed for the current fatigue/pain study. It seems to be inline with a central sensitization model, and proposes that the "subjective symptoms of orthostatic intolerance" can be treated. One of the authors is Neil Harrison.

    This study is a quackfest.
     
  13. Valentijn

    Valentijn Senior Member

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    A lot of rheumatologists hate Fibromyalgia in the same way that neurologists hate ME/CFS. Or at least they don't think it belongs in their area, and they'll actively engage in finding ways to keep those patients out of their offices. That includes putting them in the psychosomatic bin.

    Neil Harrison might be a smart guy, but he's buying into stupid ideas.
     
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  14. Joh

    Joh Inactivist

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    This made me laugh (info sheet):
    This "free" vaccination might come in handy for all the pwME who are busy planning backpacking trips through foreign continents.
     
  15. AndyPR

    AndyPR Senior Member

    Adding my tuppence worth to the posts above. Looking at that document my thoughts, in no particular order, are;

    • They need a proofreader, there are a number of spelling and grammar mistakes.
    • I personally would want them to be clearer about how open, or not, the data access would be. If I was to be involved then I would want the data to be available to all, subject to appropriate anonymization.
    • Questionnaires on pain, fatigue, mood and attention are mentioned several times - the psych part of those obviously makes me suspicious.
    • The fact that they are dismissive of the possibility of harm from the vaccination is concerning as well.
    And that's it but then I'm not as science-y as others here. :)
     
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  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Sorry, the mention of typhoid vaccine and Neil harrison made me think this had been in the information put out.

    Kevin Davies was at the Hammersmith. He is knowledgeable but I do not know much about his philosophy in recent years. From what A.B. and Valentijn have posted I am underwhelmed, to put it politely. I doubt Neil would have anything to do with this.
     
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  17. Snowdrop

    Snowdrop Rebel without a biscuit

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    For me the typhoid vaccination sends a clear message that they have no idea of ME and how our response might just be different to someone healthy. Making someone feel more sick than they already are with ME -- only someone clueless could suggest it.
     
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  18. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think that may be unfair. As far as I know the typhoid vaccine studies are on healthy people. I think it was probably a confusion to think it was going to be given to PWME. The idea of typhoid vaccine was to simulate the immune response that might cause malaise and look at neural mediation.
     
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  19. ladycatlover

    ladycatlover Senior Member

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    As usual I only have humour and distraction about serious stuff... :rolleyes: But Dr Jessica Eccles... Every time I see that name I'm reading it as Jennifer Eccles. Real give away of my age! :rofl:

     
  20. Barry53

    Barry53 Senior Member

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    A couple more tell-tales in the link you provide:-

    1) Referring to "CFS/ME", which is the BPS-brigade's usual terminology, giving subtle prominence to CFS over ME (it was a deliberate choice for that reason, I read in an email trail somewhere, not me being pernickety).

    2) "Dr Alastair Miller
    ...
    He is Chair of the British Association for Chronic Fatigue Syndrome and ME (BACME) and Principal Medical Advisor for Action for ME (AfME)."
    [My bold]
     
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