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More info on Cumbria MUS clinic.....including 'ME' FND and conversion disorders.........

Discussion in 'General ME/CFS News' started by Countrygirl, Jan 23, 2018.

  1. Countrygirl

    Countrygirl Senior Member

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    https://www.cumbriapartnership.nhs....-symptoms-service/what-does-my-diagnosis-mean

    So as not to upset uninformed patients, they are calling it the Persistent Physical Symptoms Clinic and ME is one of the main diseases they claim to treat, although their definition of it is woeful and quite inaccurate.

    For anyone in the UK, one of these unhelpful, misinformed and dangerous services will be coming your way soon if it hasn;t already been established.

    Treatment for ME
    Under the heading what does my diagnosis mean:

    (Note the attempt to win the trust of the patient by telling them that the doctor believes the symptoms are 'real'..........in other words of course they mean they seem real to the patient, but are not to the doctor. )

    Here is the section that misleadingly claims to be describing ME.............:rolleyes:

     
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  2. andyguitar

    andyguitar Senior Member

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    Not much you can say about this really. :depressed:
     
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  3. Countrygirl

    Countrygirl Senior Member

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    Oh I dunno! :rolleyes: I could say.........quite a lot, frankly. :bang-head::bang-head::bang-head::aghhh::aghhh:
     
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  4. Richie

    Richie Senior Member

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    Frankie and Mickie, they know "the facts" esp about humility, irony oh and candida, of course.

    Stone says 5% misdiagnosis in FNS. Julia Newton reckons about 1/3 in CFS/ME, so there's a problematic start. You can't label sb as functional on the grounds of having CFS/ME if they have been misdiagnosed in the 1st place, so how are the Cumbrians going to diagnose - don't do any tests or they will think they are ill might be an approach in line with some of the mentioned "experts".
     
  5. Richie

    Richie Senior Member

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    Stone on the linked site claims migraine scans are normal. This is not so. He does not label migraine as an FNS, and it's a good job, since recent work has shown it to be an immunologically addressable disease. So why use the disease migraine as an an analogy for other conditions which JS does not deem to be disease? Does the recent history of migraine not rather show that some FNS's may just be diseases in waiting?

    Stone:

    "Getting your head around this can take time. You don’t have a disease, but your not imagining it either.

    The following points may help you.

    The example of migraine. Sometimes it can help to compare your symptoms to those in migraine. This is a condition which is common, in which brain scans and all tests are normal and which can be associated with all kinds of odd neurological symptoms like flashing lights, tingling down one side of the body or even paralysis. In migraine we know a bit more about which bits of the brain are going wrong and that nerves in the brain are firing abnormally, but its still a diagnosis that is made on the basis of your story. "

    Science:
    https://www.medicalnewstoday.com/articles/258252.php

    https://www.sciencedaily.com/releases/2017/03/170329161503.htm

    http://www.sciencemag.org/news/2016/01/feature-will-antibodies-finally-put-end-migraines

    Stone:

    "Why is it ok to admit you’re depressed when you have multiple sclerosis? Many patients with neurological conditions get depressed and anxious. Pain, disability, uncertainty about the future, effect on jobs and relationhips can all take their toll. What’s interesting is that when someone has a diagnosis like multiple sclerosis they usually find it much easier to tell people that they are feeling low or worried. Because no one questions their neurological disease, its ok to admit to these things – people are often sympathetic."

    Well, perhaps it would be easier if Stone et al were a lot more wary of labelling FNS's as non diseases, especially if the best he can do to elicit sympathy for FNS's is to use the analogy of a recognised disease, innaccurately described i.e. migraine.

    There is a mass of interplay between psychology (not necessarily mental illness), immunology, inflammation, infection, mitochondrial dysfunction, nutritional deficiency etc. etc. and the label "FNS" understood as (psychologically based) software disorder, is feeble. Perhaps that's why the arguments to back it up are too.
     
    Last edited: Jan 23, 2018
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  6. Richie

    Richie Senior Member

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    Interesting that this immunological naif does not mention the role TH activation, interferon gamma, IDO etc, might be playing in MS associated depression.

    The guy just don't know enough.
     
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  7. Countrygirl

    Countrygirl Senior Member

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    If you can bear to read it, here is the plan that is being rolled out nationwide:

    https://www.jcpmh.info/wp-content/uploads/jcpmh-mus-guide.pdf

    How they think they will cure ME:

     
  8. Richie

    Richie Senior Member

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    Re CFS/ME

    CBT/GET failed as cure so now re-branding as "functional improvement" i.e. NHS endorses pacing, but not saying so (loss of face etc.). Offers little hope, but can't be accused of letting people down as it offers them so little, so not like thiose nasty Lightning Process boys and girls.

    CBT/GET trial was really a failure, so the question is how will this be better? Answer above.
     
  9. Cinders66

    Cinders66 Senior Member

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    It's amazing this rebranding and alternative form of CFS/me clinic was allowed. It completely sends the wrong signal out to Drs and looks very inadequate for patients. A clinical psychologist should not be leading a service for CFS/ME but should just be on the team for those who need it. There's so much change that needs to be brought about in uk but where actually is the #timeforunrest activism ?
     
  10. Richie

    Richie Senior Member

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    What happens if you want to" validate" and if you think as a CFS interested psychologist?

    Here's a possible pattern:

    Women may have higher immune response to stress, illness is a stress, the havoc it wreaks in life is a stress, and the guilt is a stress, and lack of understanding so plenty of psychology for the immune system to get fired up by.

    So a woman with CFS ME might be "validated" and leave guilt free if it is all put down to her gender, sex and stressors. The above account would fit in with the validation, no guilt, listening , understanding approach advocated and also with the female sex/gender,, autonomic arousal, high initial immune response risks of White et al. and also with BPS in general. A NICE biopsychosocial approach. And maybe well meant.

    But lack of treatment is a major stress too so what about that? The psychological lobby tell us that lifestyle etc contributes to illness, so what illnesses do we have and how are they going to TREAT them, since mismanagement of lives often arises from the illness anyway,,and lack of medical treatment is a very major stress.

    Interesting work is being done on gut bacteria whihc may be relevant to some.
    Female mice when stressed have potentially pathological gut bacteria changes which male mice do not show. So there is a possible biological link for any stressor- neuro immune illness continuum among women. But how much does your average psychologist know about gut bacteria, how interested are they etc.? Will validation involve referring certain patients to gut bacteria specialists?

    Will such an angle be an area of ongoing concern, or any other biophysical angle?

    And what of misdiagnosis?

    But the excuses arise from the logic. FNS is not disease.

    If we have FNS we do not have a "disease" at all, so the question of cure is moot. There's nowt to cure, anyway! And if all they aim at is a bit of improvement why should they care, they are not setting out to cure a non disease.. If they set their standards low they can't be accused of failure, unlike CBT/GET.

    From being an illness to be cured by GET, ME/CFS now risks being demoted to a non disease. Great.

    I hope I am wrong.
     
  11. andyguitar

    andyguitar Senior Member

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    Ok, as things stand this idea looks like a disaster. As @Richie has observed ME/CFS is being regarded as a non-disease which cannot be cured. But there is hope. The N.I.C.E guidlines for ME/CFS are due for review and the early stages have begun. The information I have seen and heard about how that could, and I stress could, turn out leads me to believe that by the end of that process ME/CFS will be regarded as a real physical illness.
     
  12. Richie

    Richie Senior Member

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    Hope so,
     

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