ME exercise therapy guidance scapped by Health watchdog Nice
Victory for campaigners as graded exercise therapy they rated ‘harmful’ is taken off list of recommended treatments
A disputed therapy that encourages people with ME to gradually increase physical activity will no longer be officially recommended, a health watchdog said, marking a victory for campaigners.
The controversial treatment, called graded exercise therapy, has been removed from guidance given by the National Institute for Health and Care Excellence (Nice) for diagnosing and managing myalgic encephalomyelitis, which is also known as chronic fatigue syndrome.
The long-awaited landmark guidance had been due in August but was put on hold following concerns from some groups over its contents. It is thought some health professionals had been unhappy with some of the recommendations made by Nice.
NICE ME/CFS guideline outlines steps for better diagnosis and management
NICE has today (29 October 2021) published its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
In common with all other NICE guidelines, it states quite clearly:
Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
[ Added extra information. ]
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I am so pleased to see this. For too long NICE “guidelines” have been treated as absolute law. It is clear that they are best available advice, but are fallible like the people who write them. Please let’s get back to a situation where they are guidance to be interpreted for each individual person and not absolute, uncontested policy that doctors have to follow on fear of punishment.
Yes, they say that but a doctor effectively has to follow the guidelines or be prepared to explain why they have not to local managers, prescribing leads and ultimately the GMC/ courts. It is increasingly difficult to go outside the guidelines and doctors are risking a lot if they do.
I wonder how many here could tick all the boxes based on their experiences:
1.1 Information for people with thyroid disease, their families and carers
Presenting information
1.1.1 Ensure that information is presented to facilitate shared decision making, as recommended in the NICE guideline on shared decision making.
General information
1.1.2 Explain to people with thyroid disease who need treatment, and their family or carers if appropriate, that:
Thyroid disease usually responds well to treatment.
The goal of treatment is to alleviate symptoms and align thyroid function tests within or close to the reference range.
People may feel well even when their thyroid function tests are outside the reference range.
Even when there are no symptoms, treatment may be advised to reduce the risk of long-term complications.
Even when thyroid function tests are within the reference range, changes to treatment may improve symptoms for some people.
Symptoms may lag behind treatment changes for several weeks to months.
Day-to-day changes in unexplained symptoms are unlikely to be due to underlying thyroid disease because the body has a large reservoir of thyroxine.
1.1.3 Provide people with thyroid disease, and their family or carers if appropriate, with written and verbal information on:
their underlying condition, including the role and function of the thyroid gland and what the thyroid function tests mean
risks of over- and under-treatment
their medicines
need for and frequency of monitoring
when to seek advice from a healthcare professional
how thyroid disease and medicines may affect pregnancy and fertility.
I feel that I would fail to tick a single box.
Don'y worry - I am not really disagreeing. Just pointing out how even their departure from guidelines is entirely based on what they have decided and not on the words included in the guidelines.
In the early 1980s, and suffering pain and fatigue, my GP said I must exercise more and go swimming to which I replied, ...I hate being in water ( as a child I once fell in a river while playing and had to be hauled out!!) Her reply, " Well, learn to like it". Ouch!
Back then " doctor knows best" still applied so desperate to feel better I booked swimming lessons and kept going with little progress...and much more pain.
Having persisted for many months and in growing pain and exhaustion, I reported back to the GP, she replied, " Oh that happens to some people". Every body gets tired.
End of swimming... and the beginning of my scepticism about medics.
About 15 years later after many tests and treatments both NHS and private, I was diagnosed with both FM and CFS. Realisation was then dawning and I begged for a thyroid test, I discovered that I was hypothyroid...and a difficult thyroid journey began.
I only began to discover the definitive reason for my ever declining health after I arrived here in 2017....nearly 40 years after the exercise debacle!
It wasn't called "graded exercise therapy" in the 80s but the idea was the same...the supposed cure was worse than the problem.
So, a resounding welcome for the wise decision regarding "graded exercise therapy" .... now ( and I would say this!) , the decision makers need to understand the huge importance of T3 to those of us who need a supraphysiolgical dose to function, But first, they should consider, at the point of diagnosis, that FM and CFS may be a thyroid problem...
"Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study"
However as Mollyfan comments, "It is increasingly difficult to go outside the guidelines and doctors are risking a lot if they do." Think Dr Gordon Skinner!
That is the problem, doctors can feel they are working with their hands tied behind their backs and fear serious repercussions if they breach what are clearly stated as guidelines ...not the law!
FINALLY, this was said to have happened a little while back! One of the Scandinavian countries published its harm in 2009... Yes, it really is 'Mitochondria Not Hypochondria' (💚 Thank you Dr SM - for giving out information to help more effectively deal with this!].
Yet my own Uni in 2017 published findings supporting this mitochondrial view; same place in 2018 from which I refused a dx... because there is nothing, [save for Dr SM's, among other things, supplement list which helps enormously!] Those findings - see link below for more: “
The CFS cells couldn’t produce as much energy as the control cells,” says Tomas. “At baseline, they didn’t perform as well, but the maximum they could reach under any conditions was so much lower than the controls.” “We’ve shown definitively[my emphasis] that it’s a fault in mitochondria,” says Tomas. “It points directly to a physiological, not psychological disorder.”No one should have to be appreciative that 'their' fall-back [all in their head!] position is at least squashed by this, yet still nothing changed. This NICE declaration is just another leg kicked from under this scam.
Onward and Upward AND perhaps those poor souls developing Long Covid receive more medical help, which may have spin-offs for those disregarded for so long. 🦕🌷
ME CFS [not all but some people actually die] - is so misunderstood by general medicine.
They were within hours of publishing when some (on the doctor side) expressed unhappiness with the removal of graded exercise therapy from the guidelines. They have spent a while discussing that resulting in this delayed publiction.
Previous post on the subject of the delayed publication. healthunlocked.com/thyroidu... (new-nice-guidelines-for-cfs-me-shelved..-handbags-at-dawn-and-resignations.)
WoW and Thyroid issues fall under that same cudgel! 'They' will not stop... which is why Dr SM and of course Drs S & P, et al were hounded... others crumble out of fear [and/or arrogance = ignorance] leaving so many patients to suffer and worsen, to also be sneered at and worse. Someone, Somewhere needs to take these charlatans on... Big Time, as the bullies and cowards they are. It would help by each and every person challenging them... 💚❤️💛 Not easy for some but this is how they get away with it and why we're in this position now.
I'm very pleased that the NICE committee seem to have decided to ignore the blackmail attempts of the anonymous 'health professional groups' (psychologists) who stomped out ,and threatened to take their football away with them if this revised guideline went through.
Both the items these psychologists objected too are included in the new guideline.... namely that forcing GET can be harmful, and that CBT is NOT a treatment, it's only a tool to help people cope.
This is a big blow for the psychologists whose empires are built on promoting the belief that CFS/ME is a psychological problem not a physical one.
"Although cognitive behavioural therapy (CBT) has sometimes been assumed to be a cure for ME/CFS, the guideline recommends it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness.
Baroness Finlay, Consultant in Palliative Medicine, Clinical Lead for Palliative Care for Wales, Velindre NHS Trust, and vice-chair of the guideline committee, said: “ME/CFS is a complex long-term condition that causes disordered energy metabolism and can be profoundly disabling. Those with ME/CFS need to be listened to, understood and supported to adapt their lives. The committee members involved in this guideline have worked particularly hard to ensure care becomes more empathetic and focused on the individual’s needs.”
“Prof Chris Ponting, at the Institute of Genetics and Molecular Medicine, University of Edinburgh, said: Graded exercise therapy and cognitive behavioural therapy cannot now be offered as cures.The new guidelines vindicate the longstanding views of many people with ME, their carers and families.”
....... CUE Prof. White and friends going off in a huff, hopefully to sulk in a far away corner.... for a long time..... but they'll be back , i'm quite certain.... or maybe they've already moved on .. i'm sure they can see a lot of potential (income) from psychological 'treatment' of Long Covid......
"Prof Peter White, emeritus professor of psychological medicine, at Queen Mary University of London, said: “Having looked after many patients with this illness I worry that this guideline seems to suggest that patients need to learn to live with CFS/ME, rather than be helped to recover from it. "
....... well, Prof. White and Co. ... that IS the truth of it .. people DO currently have to find a way to learn to live with it , and so it will remain until we let 'proper' Doctors and scientists look at what happens to people physically ... by looking at what happens to their bodies .. not just their minds .. and you lot were just getting in the way of that happening.. your ideas were NOT helping them recover .. psychology had become part of the problem, not part of the solution and now psychologists will just have to learn to live with it. ..
'cos NICE says so ...
so there .
(for anyone who doesn't know, Prof Peter White ( and others) were behind the (scandalous) PACE trials for .... the ones where they moved the goalposts for 'recovery' halfway through the trial .... meaning " according to the thresholds used in the PACE trial, you could simultaneously be considered ill enough to participate and well enough to be considered recovered with the same score of 60/100." healthunlocked.com/thyroidu...
Pressure grows on Lancet to review “flawed” PACE trial (Published 22 August 2018)
Re: Pressure grows on Lancet to review “flawed” PACE trial
Kewley (previous comment) makes the key point. The reason why I have signed the letter to The Lancet is that the PACE trial is methodologically so poor as to be uninterpretable. Patients may have expressed concern that the trial inappropriately reinforces psychological theories but this seems to have been used as a smoke screen by the PACE authors and associates to obscure the fact that patient scientists have identified the flawed nature of the trial. I have no personal or professional interest in ME but have been greatly impressed by the ability of ME/CFS patients to initiate the sort of critical review that should have been performed by peers.
The reason why the poor quality of this trial is now so important is that this sort of poor methodology, based on unblinded trials with subjective outcome measures, is widespread in the field of therapist-delivered treatments. A house of cards has been built that will ultimately collapse as it emerges that the same results can be obtained with any form of treatment that deliberately aims to influence patients' judgement of their health status.
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