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UK CFS PATIENTS HAVE YOU HEARD OF SUCH A THING IN THE NHS????

Discussion in 'ME/CFS Doctors' started by TedBakerBoy, Mar 15, 2017.

  1. TedBakerBoy

    TedBakerBoy

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    I've been going back and fourth to my GP recently in the U.K with no further improvement nor diagnoses. She's referred me to an unexplained medical team on the NHS, I have never heard of such a thing before, has anyone ever heard of anything like this on the NHS.?
     
  2. A.B.

    A.B. Senior Member

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    You are either being referred to a team that specialises in diagnosing rare and complex diseases, or to a team that specialises in diagnosing and treating the modern equivalent of demonic possession (psychosomatic illness).
     
  3. sarah darwins

    sarah darwins I told you I was ill

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    Sounds like you may have been referred to a Medically Unexplained Symptoms (MUS) team ... in which case, oh dear. See AB's post above.

    There are a lot of MUS threads here. It's a voguish thing in the NHS which will, unfortunately, impact us more than most. It's total garbage.
     
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  4. TedBakerBoy

    TedBakerBoy

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    I'm not possessed lmao Is that a joke or legit thing???!!!!
     
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  5. A.B.

    A.B. Senior Member

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    It's a joke. Psychosomatic illness seems to be the label that we apply to unexplained illness in the modern age. In medieval times, these would have been considered to be caused by unfavorable astral influences, demons, evil spirits, divine punishment, bad air, etc.
     
  6. TedBakerBoy

    TedBakerBoy

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    What does the MUS team actually do then? Unorthodox blood tests etc...?
     
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  7. Esther12

    Esther12 Senior Member

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    Increasingly the NHS is trying to lump together everyone with symptoms they don't understand the cause of, and then cheaply 'manage' them by encouraging them to change the way they think about and respond to their symptoms. It generally seems to be pretty terrible.

    There's a recent thread about it here, but it might assume some background knowledge to the issues: http://forums.phoenixrising.me/inde...ary-care-whats-happening-across-the-uk.48710/

    It would be worth finding out from your GP exactly what this team is offering to provide you.
     
  8. A.B.

    A.B. Senior Member

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    They will probably try to convert you to their religion. By degrees.
     
  9. sarah darwins

    sarah darwins I told you I was ill

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    They won't do anything except try to convince you you're not ill.
     
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  10. keenly

    keenly

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    The best thing to do on the NHS is get a diagnosis of something else, I.E POTS, then have your symptoms explored under that basis.

    Have you explored that option?
     
  11. Joh

    Joh Inactivist

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    Hi @TedBakerBoy,

    Did a quick google search (try NHS MUS + other words like your city) and they treat with e.g.:
    Body Oriented Psychological Therapy
    Psychoeducation
    Mindfulness - MBSR


    Apparently the team tries to convince you that it's all in your head and to "reduce health anxiety", so you do not stalk your GP anymore (they really say it's about minimizing frequent GP visits).

    I think this says it all (in the presentation: http://mus.elft.nhs.uk/Resources/Psychoeducation):
    :cry:

    But I'm not from the UK and might be completely wrong.
     
    Last edited: Mar 15, 2017
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  12. trishrhymes

    trishrhymes Senior Member

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    If it is an MUS team, from what I read, they will probably want to give you Cognitive Behaviour Therapy.

    I
    f you're lucky (relatively speaking) this will be to help you with coping strategies for chronic illnesses, if you are unlucky, it will be the sort of distorted CBT used by some psychiatrists, including in the infamous PACE trial, in which they will try to persuade you that your symptoms are the result of false illness beliefs - ie that they have no physical cause (which is bullshit).

    If you are even more unlucky they will want to put you on a graded exercise therapy program in which they will try to persuade you to increase your activity levels each week and push through the symptoms you get as a result of doing too much. This can be severely detrimental to the health of anyone with ME which includes post exertional malaise.

    These services are run by psychologists, nurses or occupational therapists, and do not involve doing any further medical investigations, though when you first go you may be assessed by a doctor.

    It's worth finding out exactly what they are offering before committing yourself to the 'treatment'. You do not have to go along with anything you are offered if you think it will not be helpful to you.
     
  13. Joh

    Joh Inactivist

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    The MUS team I found in London apparently uses graded activity/graded exercise as treatment (also in the presentation: http://mus.elft.nhs.uk/Resources/Psychoeducation):

    Again: :cry:
     
    Last edited: Mar 15, 2017
  14. trishrhymes

    trishrhymes Senior Member

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    sadly, you're not wrong, Joh. It's a total nightmare. All total bollocks.

    and you second post about people being encouraged to do all that exercise is potentially dangerous for people with ME.

    So many people with ME have been harmed by exercise therapies. It's criminal recommending them.

    :bang-head::bang-head::bang-head:
     
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  15. A.B.

    A.B. Senior Member

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    That's a pretty good description of the normal behaviour under the circumstances of having an undiagnosed illness with substantial negative impact on one's life (especially when the illness began recently and the person has not adjusted to it yet).

    Yet under the MUS paradigm, this is labelled as mental disorder. They claim this is the CAUSE of the symptoms, not the consequence, but they cannot prove that their bizarre upside-down interpretation is correct. It really comes down to belief.

    This quickly becomes amusing (or shocking, depending on the perspective) once one learns that in the past medicine has falsely labelled dozens, if not hundreds of illnesses as psychosomatic. They really thought that for example rheumatoid arthritis was the result of emotional and mental problems rather than due to autoimmunity. Their explanation was something involving mental and emotional conflicts being expressed as muscle tension which then supposedly deformed joints, causing pain and inflammation.
     
    Last edited: Mar 15, 2017
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  16. TedBakerBoy

    TedBakerBoy

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    You guys aren't filling me with hope and joy LOL.
     
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  17. Joh

    Joh Inactivist

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    Thanks Trish! Sorry, I worded that badly, I know of the dangers of GET and (the creepy ME-version of) CBT and absolutely second you of course. Meant it more in the sense that as a German I shouldn't be the one to listen to if you try to decide if you check out your local UK MUS service. Yep, it's all :bang-head::bang-head::bang-head: indeed!
     
    Last edited: Mar 15, 2017
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  18. trishrhymes

    trishrhymes Senior Member

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    @TedBakerBoy , welcome to the ME world. Of course we are assuming you actually have ME/CFS. Do you want to tell us a bit more about that?

    Stick around here on PR, you're in good company and there's lots of good advice about managing your symptoms. Also, don't give up hope - there is some excellent biomedical research going on, a lot could change in the next couple of years on both diagnosis and treatment.

    Meanwhile, learn as much as you can, rest as much as you can, and come back here with more questions if you want to.

    You might want to buy the ME Association's purple book, or join the MEA and get a free copy. And they will send a copy to your GP if you ask them to.
     
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  19. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    That's the job of the MUS team, to help you, and all of us, discover the shiny happy healthy people within, by shedding the paralysing cocoons of our false illness beliefs...

    They just want us to be butterflies, to spread our wings and fully embrace all the hope and joy life has to offer...

    Don't you want to be a bitterfly too?

    (Leaving that typo, because it amuses me.)
     
    Last edited: Mar 15, 2017
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  20. NelliePledge

    NelliePledge plodder

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    Hi BB has your doctor explained why you need to be referred to this team? NICE guidelines arent that good but they do give GPs info on how to diagnose CFS/ME dont need to be referred to anyone else if you meet the criteria. https://www.nice.org.uk/guidance/cg53/chapter/1-Guidance#diagnosis
    If you're getting referred anywhere it should be to NHS CFS/ME specialist clinic see 1.5 in the guidelines - albeit that will still just be for help with "managing the condition". Very unusual that your GP has actually used the term unexplained symptoms as they are trained not to because people dont like it for some unexplained reason :confused:;):mad:. A lot of GPs arent too good on ME but if you're not getting anywhere with yours you can change. I had a similar experience to you see these posts
    http://forums.phoenixrising.me/inde...-for-drs-first-appointment.48616/#post-800133
    http://forums.phoenixrising.me/inde...ening-across-the-uk.48710/page-17#post-804252

    boils down to being all about saving money because they think you will go away after the sausage machine Medically Unexplained Symptoms/increasing access to psychological therapy cheapo CBT having set yourself some goals increased your activity and miraculously improved

    if you've got ME symptoms particularly post exertional malaise you should get ME/CFS diagnosis according to NICE guidelines easy for me to say now after I fell into the sausage machine.

    you cant be forced into any treatment but obviously depends on your GPs attitude how that will affect your relationship going forward

    good luck
    NP
     
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