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The Nottingham Tool Kit: how the UK is selling ME patients down the river with £200 million for MUS

Discussion in 'General ME/CFS News' started by Countrygirl, Apr 20, 2017 at 1:13 PM.

  1. Sean

    Sean Senior Member

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    Not going to lie. This has really thrown me. The amounts of money here are just staggering.

    Struggling to believe they are still getting away with. What does it take to stop them and hold them to account?

    This is what real insanity looks like. And it is genuinely terrifying.

    Anybody still doubt the power of propaganda and bald-faced lies?
     
    mango, TiredSam, Chezboo and 13 others like this.
  2. Countrygirl

    Countrygirl ME is not MUS

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    Me too @Sean

    I discovered over on Suzy Chapman's thread (need to find it again) about MUS in the UK that my county was one of the few where this nonsense was to be tried as a prototype. Well, all I can say is that everything has changed. ME has swiftly become a condition that is to be treated as a mental health problem. A doctor there informed me that CFS is a 'emotional health' condition; vital medications that really help are to be removed and CBT and GET are now, suddenly, a requirement.............and no objections allowed. The patients long years of experience and knowledge of research, past and present, is rudely denied. I am very shocked by the change. It seemed to come out of the blue.

    So, referring to my post above where I questioned why the chief author of the trial had phoned my GP, could it be because they are in one of the first few areas chosen to adopt these measures? Horrible though! They certainly moved swiftly to the dark side.

    I am about to discover yet again the attitude of the main county hospital towards us. I have been refusing to be admitted again as last year they told me when I was in a very dicey state that, once they realised I had ME , that 'don't expect to be treated kindly here once the ward staff hear you have a diagnosis of that'. I have no choice to return this afternoon after a possible stroke. It will be .........'interesting'.................to see if I am threatened with bad treatment again on account of their prejudice against a whole community of patients. Now, I think the rules of the GMC has something to say about this, although when I tried to make a complaint before the person in charge told me 'we don't complaints from people with a diagnosis of ME' and refused to listen. We are in a scary position as it seems to 'open season' for us.
     
    Last edited: Apr 21, 2017 at 1:29 AM
    mango, TiredSam, Chezboo and 10 others like this.
  3. Sean

    Sean Senior Member

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    That is very very not good, and getting seriously desperate on their part to take those kinds of legal and reputational risks.

    Looks that way.

    The BPS cult know that they can't win fairly, nor concede without very serious consequences for them, so they have to dive ever further into their propaganda cesspit and try to, in effect, eliminate us. They are reduced to increasingly blatant falsehoods and malicious hate politics against their victims, and rendering them non-persons.

    All in the name of compassionate, science-based medicine, of course.

    Orwell would not be surprised, and Goebbels would be applauding.
     
    mango, adreno, TiredSam and 8 others like this.
  4. user9876

    user9876 Senior Member

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    The NICE guidelines do point out that CBT and GET should be optional and not forced on patients.

    It is worrying that doctors are being told this but each doctor is accountable for their actions not a training provider and as such it is up to them to make sure their knowledge is up to date. They are the ones who will be sued for not giving informed consent to patients they may be able to counter sue the training providers and Nottingham university but they are accountable for their own actions.

    They seem to know that PACE is getting a bit toxic and so they are trying to rename ME as MUS so that they can get away with pushing the same old treatments that don't work. There is a big business associated with this and it keeps a lot of people employed.
     
  5. Chrisb

    Chrisb Senior Member

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    It appears that that the long term holder of the title "the Nottingham Tool" will have to look to his laurels. Competition is fierce.

    "The tool is designed to generate a list for GPs of patients with possible MUS. The GP can then refine the list to exclude or include patients known to have the condition."

    GP's should surely be concerned at this. The command has come down from those who probably now rarely sully their hands by actually seeing patients, yet individual responsibility remains with the GP who has to judge whether to exclude some or include others.

    The tactic must be to divide the GPs off from management, on the basis that it will be they who will be accused of a negligent failure of professional skill and judgment in the particulars of the individual case, should anything go wrong. Management will simply say that of course a case such as that was never intended to be covered and the fault is wholly that of the GP

    @Countrygirl I think the GP should be pressed on the evidence base for the efficacy of the proposed treatment in patients of your age, with illness of commensurate duration and severity. The follow up might be to ask how many of those, presumably largely housebound, patients were required to undertake treatment at a distance of x miles from home.

    It seems that soon hospitals will require only one bed-a Procrustean one-against which all patients can be measured.

    Anyone who says they don't take complaints should have their name badge closely scrutinised before the name is ostentatiously written in the notebook-which should be on hand at all times.

    If anyone says they do not take complaints careful study of the name badge and ostentious writing in a note pad is always recommended.
     
    Aurator, Countrygirl and MEMum like this.
  6. SamanthaJ

    SamanthaJ

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    Just appalled at what is going on in your area and how you are being treated. Hope things go better today than you expect and that you're seen by someone who has some knowledge of ME or at least uses their own sense and judgement instead of following the pack. Good luck.
     
    moosie, Binkie4, Countrygirl and 5 others like this.
  7. lilpink

    lilpink Senior Member

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    Esther12, Countrygirl, MEMum and 2 others like this.
  8. Matthew Jones

    Matthew Jones Senior Member

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    It's just bizarre. How people even believe that emotions can cause physical debilitation is beyond me. People who are grieving or heartbroken don't complain they can't walk or read in their normal capacity anymore. It has nothing to do with it. What are we even supposed to all be upset about? I just don't get it.
     
    TiredSam, Chezboo, moosie and 10 others like this.
  9. A.B.

    A.B. Senior Member

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    These ideas just don't have a connection to reality.

    I was generally happy and successful (for my age) when I got sick.

    And a positive attitude has done fuck all to help me. On the contrary I think it prevented me from taking the problem seriously soon enough and making necessary adjustments. A positive attitude can be a form of denial too. Indeed it seems very common for patients to employ a positive attitude to deny the full extent of the problem, at least initially. This is of course in stark contrast to the psychosocial narrative where the patient is supposedly dominated by a negative attitude to the point their disability is maintained by this factor alone.

    Viewing the problem as mental health issue has only produced more suffering and confusion, not the relief and clarity these people promise.

    Either the people promoting these psychosomatic ideas are crazy (in the psychiatric sense) or they are corrupt and trying to protect financial interests. Or maybe there are some cult-like dynamics at play in the social environment of these people that makes it impossibe to acknowledge reality (everyone must believe, even if it's not true).
     
    Last edited: Apr 21, 2017 at 7:59 AM
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  10. Ysabelle-S

    Ysabelle-S Senior Member

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    Anyone forced into going to one of these 'services' must keep detailed notes of what happens, with a view to future legal action. Also, make sure others are informed about what is happening. If your doctor's attitude has changed, note down when it seemed to happen. It may come in relevant later. Any fallout, health-wise or in any other respect, as a consequence of the withholding of medical tests and the promotion of these 'therapies', must be recorded. The more evidence collected, the better. If necessary, make video recordings if your health gets worse.
     
    Chezboo, Cohen2, HowToEscape? and 7 others like this.
  11. RogerBlack

    RogerBlack Senior Member

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    The thread title may be somewhat misleading - the document talks about 200 million for three years up to 2011.
    While this may be ongoing, has it in fact been funded at this level, or was it initially?
     
  12. MEMum

    MEMum Senior Member

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    Oh No! That's even worse if this amount has already been wasted.
     
    Sean and Countrygirl like this.
  13. Countrygirl

    Countrygirl ME is not MUS

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    Good point!

    I am just about to leave for a certain place :(, so can't search for an answer right now.
     
    MEMum and trishrhymes like this.
  14. moosie

    moosie

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    Good Luck!!! x
     
  15. Aurator

    Aurator Senior Member

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    "Previous research highlighted the need for a streamlined process of identification of MUS...streamlined diagnosis of MUS by developing methods for estimating the number of patients suffering with MUS using electronic patient records...Morriss developed a search tool ‘The Nottingham Tool’...The tool is designed to generate a list for GPs of patients with possible MUS. The GP can then refine the list to exclude or include patients known to have the condition."

    As soon as anyone in charge of so much as a dungheap starts talking euphemistically about "streamlining", you know you're dealing primarily with a cost-cutting exercise.

    For anyone who can think straight, the article's complete absence of intellectual rigour is plain to see in the way it moves effortlessly from talking about patients with "possible MUS" to patients "known to have the condition". How anyone can be known to have a condition that is not even known to exist is conveniently ignored.

    I'm sorry to say that there was probably more collective sanity among the Branch Davidians of Waco than there appears to be among this cult of academic nonentities. If there wasn't, then at least the Davidians had the edge on sincerity.
     
    TiredSam, meandthecat, Hutan and 7 others like this.
  16. alex3619

    alex3619 Senior Member

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    ... and sometimes dangerous denial. My issue was overconfidence. I was sure I could figure a way through. It didn't work out that way.
     
    mango, TiredSam, Cohen2 and 12 others like this.
  17. jimells

    jimells Senior Member

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    Here is one of the studies mentioned in the original post. It is complete rubbish, of course:

    https://www.ncbi.nlm.nih.gov/pubmed/16814635
    Note this study doesn't claim to measure whether the treatment is effective, only whether GPs can be convinced to browbeat patients into submission. And apparently the answer is a resounding "Yes".

    This will not stop without court action. The first thing I would want to ask for is a temporary injunction to stop the use of the "Nottingham Tool" until the issues can be explored in open court.

    The phrase "criminal conspiracy" comes to mind, but crown prosecutors will never intervene. In the US, one advantage of a civil complaint is that the standard of proof of guilt is much lower than a criminal complaint.
     
  18. Countrygirl

    Countrygirl ME is not MUS

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    Well I am back!

    ….after what was one of the most frustrating and unpleasant medical appointments I have had in 35 years. :mad::cry:

    I have had to spend three hours calming down. Not quite made it yet!

    I was supposed to have a three hour appointment to investigate the cause and damage caused by malignant hypertension.

    I saw an Indian (I think) doctor with an unpronounceable name.

    He had clearly made up his mind before I had even walked through the door. All he could see was an ME diagnosis which he clearly despised. (Later confirmed by someone in the hospital)

    I started to explain my latest episode, the damage of a previous bout to the vestibular system, the resultant encephalopathy symptoms which are so severe they are on a par with severe ME for about three months before they recede, the angina caused, I was told, by the impact of the rapid spikes reaching on one occasion that I know of, 250/130+, but usually around 230/130 and uncontrollable so far. One bout left me unconscious for several hours and unable to wake up properly for a week. Very unpleasant and very disabling symptoms followed this.

    However, all this doctor could see was the ME diagnosis.

    First he told me the above consequences were probably caused by me becoming ‘a little fearful about something’. !!

    When I denied this, he said well, I expect you get a little anxious! (No, but I do get very angry when confronted by people like him!! :ill:)

    I denied it!

    Well, he said, we don’t agree with Professor Pinching’s diagnosis. (ME) We overturned that a couple of years ago!!! (News to me! I was diagnosed by a number of doctors and consultants over 35 years) It was apparently over turned by the doctor from the ‘fatigue clinic’ where I haven’t even been yet, but he gave me a tilt table test where my BP, as I predicted, rose to 225/130 ish up on standing instead of falling to low levels as it always did before. Apparently, he wrote to my GP and said my BP was normal when on my feet (225/130 is normal?) and that I do not have ME. I didn't even discuss it with him.

    I guess my official diagnosis is MUS, although he didn’t say this.

    He then told me that if I really had had a physical illness for the last 35 years I would be dead by now !

    He clearly had no respect for my experience or interpretation of my symptoms, my knowledge, or my BP problems (witnessed by a number of doctors) and the consequences or the doctors who have confirmed it.

    Realising that my integrity, sanity and truthfulness were being attacked and dismissed, I began to defend my corner by launching into a discussion on the various research projects, but only got as far as mentioning Dr Charles S, and he became very angry and told me I mustn't listen to him and others like him. (Sorry Charles!)

    I asked what can I do when my BP spikes so high and has horrible and long lasting and even permanent consequences? He shrugged his shoulders and told me, ‘Well if you’ve lived this long, you will possibly live a bit longer’.

    He showed me a previous brain scan and indicated various areas of damage where my brain light up like little light bulbs. No idea what that means so will ignore that.

    He then stuck out his hand to me, dismissing me. I took his hand, put my (apparently very red face) close to his and said: Good job I have made my will then doctor isn’t it!.............and walked out………..very, very angry and also scared for the future. I have no idea where I go from here.


    When I was outside I was told a story and I have been given permission to write it here providing I don’t mention the town concerned.

    A person with ME wrote to a local newspaper to complain about how badly she is being treated by the medical profession. The editor published it and asked for other readers to write in if they also had ME and were experiencing similar difficulties with the medical profession. Several letters were received that week.

    The same week before the next copy was printed the editor came into the hospital for an appointment. The consultant had read the ME patient’s letter in the paper. He told the editor if he published any more letters from ME patients he would find in future that his treatment at the hospital would deteriorate. No more letters were published.

    At the moment………..until I feel I can fight on……………………I despair.

    Is this the result of the new MUS policy? I just don’t know. It might be just a continuation of the usual attitude but I was shocked to find how far they will take their ……… to be frank……………abuse of those of us with ME.

    Still trying to lose my anger.

    The moral of the tale is that it is completely pointless going to a doctor or hospital even if your problem is potential serious and unconnected to ME.
     
  19. SamanthaJ

    SamanthaJ

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    @Countrygirl, that sounds about as bad as possible. It's obviously medical negligence of the most reckless kind. I don't understand the vindictiveness - if they think we're mentally ill, wouldn't we still deserve compassion and respect? Wish I had something helpful or constructive to say - maybe someone else has ideas? Well done for getting through it without exploding.

    Interesting story about the newspaper editor - do you think Fleet Street editors have been threatened with the same thing? Would explain a lot...
     
    Last edited: Apr 23, 2017 at 10:28 AM
  20. Chrisb

    Chrisb Senior Member

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    @Countrygirl
    One presumes the newspaper editor was seeing doctors for incurable problems with his spine.

    I am sorry to her of the difficulties experienced, which were probably not wholly unexpected. It sounds like the doctor's fitness to practise should be questioned, as he seems to have failed to investigate the issues which were the cause of the appointment. But that is all for another day. I hope you can regain your equinamity sufficiently to recall and note any other relevant points which come to mind.

    Look after yourself. It looks as though those who are well remunerated for having that responsibility prefer just to take the money.
     

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