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ME/CFS LINKS & INFO (*NICE Guideline Judicial Review High Court11/12th Feb 2009*)
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When it comes down to it in reality it is how GP's interpret the NICE guidelines that is important as well. I saw a anaesthetist at a pain clinic 3 or 4 years ago who told me I had 2 choices, I could have CBT and get better or I could refuse it and my health would stay exactly the same for the next 20 odd years because as he said cancer and heart patients have CBT so why did I not think it would help me.
Sadly some doctors will never get to grips with the fact that ME is a phsysiological illness and not the psychological illness they have been told it is for so many years. Their lack of interest in the illness means more often than not we are better informed about our health and provide THEM with the information they need to treat us. Sometimes we haven't come much further on than the cases 20 odd years ago when children bed bound in hospital with ME were thrown into the swimming pool to see if they were just being lazy or school phobic and it was thought that this would show there was nothing wrong with them0 -
I saw a anaesthetist at a pain clinic 3 or 4 years ago who told me I had 2 choices, I could have CBT and get better or I could refuse it and my health would stay exactly the same for the next 20 odd years because as he said cancer and heart patients have CBT so why did I not think it would help me.
It's so difficult dealing with most medical people when you have ME! Does he really think that people recover from cancer and heart disease through CBT? They get offered CBT to help cope with having the disease, while their disease is treated through other means.
I think most people with ME would accept that CBT may be helpful in coming to terms with the illness - if it was offered as an extra, not a cure.0 -
It's so difficult dealing with most medical people when you have ME! Does he really think that people recover from cancer and heart disease through CBT? They get offered CBT to help cope with having the disease, while their disease is treated through other means.
I think you mean they RARELY get CBT, unless they have "abnormal illness behaviour". Do people honestly think if you randomly quizz patients at an oncology clinic most -- if any -- wouldeven have *heard* of CBT?! I think not.
CBT is not person-centred counselling like adaptation therapy, it's anti-adaptation therapy. It's "goal-orientated", a rehabilitation therapy, sometimes called re-exposure therapy (for phobias etc), the theory of which is that people's thoughts and behaviours are responsible for keeping them ill. It's more like a religion that a therapy and is being aggressively propagandised within academia/ the media, even to the extent that it's being pushed blanket-fashion to classrooms of well schoolkids. Ethics? Who needs 'em.
The great lie that CBT is "widely" used in cancer etc was promoted by psychiatry with the help of astroturf charity AfME (almost the only charity that disputes the need for the Judical review, which does not have "members" as it is not democratically run.) and it's previous and current trustees/CEO who are totally out of touch with the reality of sufferers' living hell of neglect, abuse, ridicule, poverty and stigma.
It goes ithout saying CBT and NICE's propaganda is grossly offensive and outright dangerous for people with the profoundly severe, multi-systemic organic disease ME. Why?
Well because the public/media/authorities are not completely stupid and see there's "no smoke without fire". They may have even read that the supposed "success" of CBT is "proof of concept" that CFS is psychosomatic (and that ME exists only in a name). This would mean it that patients should not be treated as if they were physically ill, with investigations, medical treatments, advocacy and appropriate advice to conserve energy, provision of personal care, monitoring, biomedical treatment like antivirals, immune and mito therapies etc, but should instead be weaned off such "faulty" beliefs and gently and dishonstly given a "gentle" kick up the backside, often with advice to those around them, "don't make them too comfortable" (when doctors are not actually calling us "pond life").
The CBT model also contends that there are no known pathologies and that "gentle" exercise cannot be harmful -- presumably in the same way graded sugar eating "could not" be harmful to diabetics.
However it has been known since the 1950s at least that exercise is the worst possible thing that pw ME can do, and there's a long body of evidence of cardiac, immune and mitochondrial abnormalities which the new Myhill study only confirms. Patient surveys show up to 90% of respondents made worse by trivially graded exercise, but no one listens; the fraudulent psychobabble has greater authority, and after all, says patients are delusional so we *would* say that. (But there's that annoying WHO organic neurological classification and NHS read-code.)
And all the meanwhile, as the Barts' NICE excerpts posted above show, there is absolutely nothing else being offered for patients, especially the high-priority of the severely affected.I think most people with ME would accept that CBT may be helpful in coming to terms with the illness - if it was offered as an extra, not a cure.
There is another problem which might be confusing people which is that some psychs have also redefined CBT and are abusing the name when they really mean person centred counselling or advocacy. Carruthers et al state clearly in the lauded 2003 "Canadian" "ME/CFS" Definition that therapists who provide supportive counselling should NOT call it CBT!
Anyone who'se confused as to what CBT is officially and widely, could just google CBt and "biopsychosocial", or look up a mental health web site. You'll see list of behavioural/mental and psychosocial issues like phobia, anxiety, addiction, relationship problems, etc. Will you see cancer, AIDS or MS in those lists? Of course not, although you might see "CFS" there, which in the UK just means tiredness and has little to do with historically genuine ME.
CBT is all about getting results, not making the patient feel better -- even if it means "redefining" what cure/recovery means. Graded exercise is usually covered by the "behavioural" component.
I shouldn't really have to reiterate that the activity ceiling in ME is a pathophysiological disease process and can't be changed by DOING MORE no matter how "gentle". The very IDEA is absurd because profound intolerance to exertion has always been hardwired into ME definitions, until they were replaced with silly season "CFS".
If people are genuinely cured by CBT/GET then they have failed a diagnostic test for ME (lots of people with ME are misdiagnosed because the UK has rejected ME diagnostic criteria). Sadly some noob/naive/mild sufferers are "positive" about any proposed therapy no matter how lacking in rationale, until they relapse profoundly and spend the rest of their life severely affected. Others like MP John Brymnor (sp) will die of heart failure due to the exertion.0 -
Have any of you actually read the guideline?
Yes, of course.It doesn't say at any point that it's "all in the head" - in fact it says just the opposite - several times!
More importantly than jus describing something in a negative, does it actually say ME is a discrete organic disease? Does it say that it has recognisable, testable pathologies? Does it have a literature review of the biology? Does it actually define what it's talking about, or does it just say fatigue and any other symptom? And that is supposed to = ME. That seems like a cruel joke to most sufferers.
DOes it actually say the Royal Colleges Report was wrong to supplant ME with CFS and describe it as a mental illness, or that the CMOs report was wrong to prevaricate over the fundementals and then recommend CBT/GET? Because any genuine U-turn would have to do that.It recommends CBT as a way to cope with the condition - NICE recommend the same thing for cancer patients - does that mean they think cancer is all in your head?!
Do you also object to cancer patients who protest NICE's refusal to recommend certain cancer drugs?And GET is proven in clinical trials to help some people, so NICE recommends that it be OFFERED to people who want to try it - nobody will be forced to try it if they don't want to.
You do realise the guidelines effectively ban any other treatments like antivirals, immune therapies, mito therapies and supplements etc, which are the things that sufferers most need (along with investigation) -- that is part of the basis of criticism of the JR. This is an outrageous state of affairs. UK doctors are currently scared stiff and "helpless" when it comes to trying anything else for even the most severely affected patients!If this guideline gets withdrawn, the NHS will withdraw all their services for patients with ME because they will be under no obligation to provide them any more.
There is nothing good in the guideline e.g. dr-pt "partnership" that is not already in official general doctor's guidance and does not address the particular problems of ME. Bland vague aspirations do not disguise psychologisation.I think that what the One Click Group are doing is completely counter-productive and will make my life, as someone with CFS, incredibly difficult.
As for your belief you will suffer if the guidelines are withdrawn; I don't see why, given that CBT/GET are entirely nonspecific rehabilitation which is in vogue for all "psychosocial" disorders right now. I wish those happy to receive CBT/GET would be content to do so using existing "rehabilitation" services without having to endorse an artificial market for them under the misuse of "M.E." (It's not like OT/physio/mental health services were just invented for ME/CFS).
Remember something like 18 out of 20 ME charities reject the guidelines. For once most of them have got something right. The JR should have the support of all sufferers.0 -
I can't waste what energy I have with bickering among ourselves and I don't think that makes us look any better.
Re treatment, I get none. My gp leans back in his chair, folds his arms & says "there is nothing for ME". Full stop. I keep waiting to be offered this CBT thing and am ready to blast him if he tries it . But I wanted to ask you one thing... doctors have been very wrong before. Was it not MS that they said was hysteria & all in the mind ? And there was something else, was it to do with polio ?? If anybody can verify this then that's going to be my ammunition if ever I get hassled !0 -
Mardatha and I must have the same GP. He says it must be your ME if I go with anything new or he says there is nothing I can do for you, I'll see you in 6months/or a year.
As I said in an earlier post my husband left me 3 months ago after 20 years and his retiral because he needs to think and I am living proof that GET is definitely not a good idea. I have been left with a large dog to walk and although I get some help with him I am having to take him out most days and yesterday my legs started to shake and my eyesight started to blur and I almost had to run home because if I had collapsed I might not have been found. I am so scared that I am starting to relapse because I have to keep going or I will completely stuck. My GP is aware of my situation but hasn't been near me. My ME nurse specialist is visiting once a month, that is all the time he has as he is it for Fife and he is the only one in Scotland come to that. He has put me forward for a joint social work assessment because he can't offer the support he feels I need but that hasn't progressed yet.
My husband is still sitting somewhere thinking while my world falls apart round about me. I have no strength left and like Mardatha I don't want to get into arguments about how unfairly treated we are. After 25 years that's a given, if you think things are bad now you should have dealt with the medical profession then. One of my GPS even said all I needed was a man and look where that got me!!0 -
Gimmiedadough wrote: »As I've described above, this does not make sense. People like myself have been living in this hellish ****hole for twenty years, and the BEST I can honestly hope for from my GPs is that they'll continue to RX some inadequate pain/sleep medication and won't section me like they did Sophia Mirza. Surely the acid test of any therapy is whether it would have been likely to help or harm Ms Mirza. The LAST thing severely affected sufferers need is for some pompous oaf (probably not eveb a psych but an OT/ SW/ nurse) to come along and tell them that they're thinking all wrong, they have "fear avoidance", etc, and that some physical jerks will help.
I agree with your post. CBT and GET have been very misused with regard to ME patients and I know people who have been made ill through nurses/doctors using these therapies because they have treated ME as a psychological problem. I also know others who have been helped by sensitive treatment given by people who understand ME where the CBT has been used to help people come to terms with their illness.
I, too, have been living (if you can call it that) with ME for over 20 years. I have been the "first contact" for our local support group and have spoken to many other people with ME. I have found that most go through a stage of fighting against the illness, struggling to maintain their old life. Those who are able to adjust mentally to having ME are those whose lives become easier. Their ME symptoms don't disappear but by not using energy fighting the illness or grieving for their lost life, people can manage their health and start to see some good in their new life. I'm sure the same applies to people who have MS or strokes or other crippling illnesses.0 -
That's what I did. Spent 2 years fighting to get better and get back to work. Got worse and worse. Now I just live with it. I rest I read I knit. I still have the birds the air the sky and my mind. And there's no way any doctor or nurse or psychiatrist is any better than I am and I never forget that !!0
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It's taken me two years to learn not to fight all the time, now I'm in the state where I feel guilty about not acheiving the tasks I can only achieve if I push too hard but I try not to push... How long does it take to 'stop feeling guilty'?Eat food. Not too much. Mostly plants - Michael Pollan
48 down, 22 to go
Low carb, low oxalate Primal + dairy
From size 24 to 16 and now stuck...0 -
maybe that depends on how active a conscience you've got ! :rolleyes:
I do feel guilty if I'm not doing something - so now I do things that are easy for me. No use wasting what energy & strength you've got left in fretting - cos then things round and round the mulberry bush inside your head.0
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