NEW NICE GUIDELINES PUBLISHED 29th October 2021

BrightCandle

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That is pretty terrible news. The torture will continue and the guidelines won't be followed. I mean it gives us an avenue to sue for negligence but even NICE admitted doctors don't have to follow the guidance and the bbc article was pretty unfavourable to patients. I thought the worst would just be how thoroughly out of date and ineffective this rollback was but alas no all along the cfs clinics were just going to bring things into more mess.

Still not safe to seek treatment, have to continue hiding from the NHS as before.
 
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The Royal Colleges revolt against the NICE guidelines:

https://www.rcplondon.ac.uk/news/me...dDL0Knf_DMbfJze4iIuj0VQuYZtNkr88O_8Q90_IzFW0Y

Medical leaders sign joint statement in response to NICE guidance on ME/CFS
Details
29 October 2021

Press & public relations
Telephone: +44 (0)20 3075 1466 +44 (0)7896 416409
Email: media@rcp.ac.uk
Medical leaders have signed a joint statement in response to the National Institute for Health and Care Excellence (NICE) guidance on the treatment and diagnosis of Myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS).

We are pleased that NICE have now published their guidance for the management of ME/CFS which is a chronic, poorly understood condition and can be highly disabling and distressing. It is important that all patients with this condition are given access to the best possible services and treatments available.
The published guideline contains some positive changes, but these do not go as far as we would have liked and understate the importance of activity and exercise in the management of ME/CFS and the connection between people’s mental and physical health. We also do not think the changes represent the positive discussions that have been had with patient groups.

As in many chronic conditions, people’s mental and physical health are intrinsically linked. This guidance risks undermining the importance of these links by dismissing the potential of treatments such as Cognitive Behavioural Therapy (CBT) as of less value in alleviating symptoms than pharmacological interventions.
There is considerable disquiet in the medical profession and some patient groups about the way the data and evidence have been assessed but the important thing now is that services are commissioned in a safe and effective way that does not disadvantage any patients being treated now or in the future.
When commissioning services we would reiterate that:

Graded Exercise Therapy) as defined in the guidance is not reflective of the personalised paced exercise programmes that are currently used in the NHS and termed GET. These have provided benefit to many patients and should not be discontinued. However, we recognise that the phrase GET is unhelpful and this terminology should be dropped to allow clinicians to work with their patients in a more productive way.
CBT remains a valuable treatment for alleviating symptoms in ME/CFS and services should ensure patients have access to this and other psychological therapies.

Specialist rehabilitation medicine services and exercise medicine services regularly look after patients with ME/CFS (and also provide complex care and long-term support for very severe ME/CFS) but are not specifically recommended in the guidance. There are very few dedicated ME/CFS specialist services either in the community or hospital setting and thus if commissioners do not use specialist rehabilitation medicine services and exercise medicine services, these patients will lose out.

Commissioners must also take action to ensure training and support is available for the full range of specialist ME/CFS roles needed and are easily accessible for GPs and other clinicians across the NHS, so that this guidance can effectively be put into practice.
Many patients with ME/CFS have other conditions including chronic pain and fibromyalgia which are improved with exercise as recommended in other NICE guidance. It is important that a holistic approach is taken to ensure that other conditions do not deteriorate.
Royal College of Physicians
Royal College of Physicians of Edinburgh
Royal College of General Practitioners
Royal College of Psychiatrists
Academy of Medical Royal Colleges
Faculty of Sport and Exercise Medicine
Faculty of Occupational Medicine
I see this bunch of anachronisms are adhering to their hippocratic oath to do no harm.
As William Weir has recently noted the UK medical establishment is firmly attached to scientific dogma that has no place in the 21st century.
Shame on all of them!
 
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That is pretty terrible news. The torture will continue and the guidelines won't be followed. I mean it gives us an avenue to sue for negligence but even NICE admitted doctors don't have to follow the guidance and the bbc article was pretty unfavourable to patients. I thought the worst would just be how thoroughly out of date and ineffective this rollback was but alas no all along the cfs clinics were just going to bring things into more mess.

Still not safe to seek treatment, have to continue hiding from the NHS as before.
I like that 'have to continue hiding from the NHS as before'.
For the first time, since I was diagnosed 11 years ago, I have found a GP who acknowledges that pwME are the experts in their illness and that the new guidelines don't amount to a hill of beans. He is supportive while admitting that there really is nothing he can do for me.
 

BrightCandle

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I like that 'have to continue hiding from the NHS as before'.
For the first time, since I was diagnosed 11 years ago, I have found a GP who acknowledges that pwME are the experts in their illness and that the new guidelines don't amount to a hill of beans. He is supportive while admitting that there really is nothing he can do for me.
My GP in the past year just ramped up the denial, its now at the stage where they wont even sign my prescriptions for conditions unrelated to my ME that have been prescribed by specialists. I avoid talking to them at all if I can because its kind of dangerous with that level of prejudice they have so far in the last 2 years only taken from me when I have needed help. They have blocked me moving GP twice now, I don't know how that is even allowed but my plan is to move house and out of the area then a new GP will have little choice but to move on without records. These guidelines aren't enough to get them into a different mode.
 
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My GP in the past year just ramped up the denial, its now at the stage where they wont even sign my prescriptions for conditions unrelated to my ME that have been prescribed by specialists. I avoid talking to them at all if I can because its kind of dangerous with that level of prejudice they have so far in the last 2 years only taken from me when I have needed help. They have blocked me moving GP twice now, I don't know how that is even allowed but my plan is to move house and out of the area then a new GP will have little choice but to move on without records. These guidelines aren't enough to get them into a different mode.
That is terrible. I hope that a move will at least get you to a surgery where you have a GP who is neutral in their attitude towards you.
I moved GP practice after my diagnosis by a private consultant, as the 3 GP's at the surgery were all hostile towards me for having the temerity to say I didn't want to take anti depressants and that I wasn't suffering from depression. I made a complaint against them and guess what the practice manager found in their favour. I was just too ill to pursue it any further.
At my new GP surgery I immediately ran into a young GP who was really rude and full of stigma towards pwME. I did make a complaint against him and the senior doctor at the practice did apologise! Still the treatment offered amounted to take anti depressants and fend for yourself.
Sadly, I agree that there is nothing in these guidelines to prevent that kind of discrimination from GPs. There is no commitment in the new guideline to put ME as a compulsory part of the curriculum for medical degrees. My daughter's friend qualified as a GP 2 years ago and she said that there was no mention of ME during 7 years of training!
 
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Invest In ME have released a press release on the new NICE guideline. It is a devastating critique of the current state of affairs with regard to ME in the UK. I quote it in full as it is so important to have people who will speak truth to power. This is more can be said for many of the self appointed representatives of the ME community ( and yes I am talking about Forward ME, ME Action and the ME Association).

NICE GUIDELINES - TAKING US FORWARD TO 2007
The National Institute for Health and Care Excellence (NICE) has today (29 October 2021) released a statement [1] to announce the publication of the new updated guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Now designated ng206, the guidelines document [2] of 2021 replaces the flawed NICE guidelines published in 2007 (CG53) [3].

It would be easy to create a few popular soundbites and make positive noises about these guidelines and how they will change the lives of people with ME.
Yet it may be more prudent to add realism to the discussion – based on experiences from years of consistent campaigning to build a better future for those affected by this disease.

The Process
Publication of the guidelines follows several years of discussions by a "balanced" (NICE's words [4]) working group, the expenditure of many hundreds of thousands of pounds of public money, a review period undertaken whereby all stakeholders could comment on the draft guidelines, and three separate publication dates being set by NICE before the final version of the guidelines documents are released to the public today.

Yet the guidelines process will be remembered more for the period of confusion, secrecy and miscommunication that followed the irregular pause in publication of the guidelines that was instigated by NICE on 17 August 2021 [5], supposedly due to "concerns" by some establishment organisations.

Then followed months of secret discussions with preferred groups, breaches of NICE's guidelines development rules and regulations, perceived caving in to pressure from some establishment influences, and selection of a minority of compliant “patient representative groups” to attend an illicit roundtable meeting. All held away from any scrutiny by the vast majority of registered stakeholders and from all people with ME and their families.

The roundtable meeting had no credible meaning, was constructed with little adherence to any acceptable due process and yet
partially legitimised by some self-serving organisations who claimed to want the guidelines published immediately on the one hand, while sanctioning the pause in publication by happily participating in the roundtable on the other.
Predictably, the roundtable achieved nothing of consequence.

Yet it was the finale to a guidelines development process that had turned into a debacle with mistrust brought on by the lack of transparency shown by NICE and by external influences causing anxiety and despair amongst patients.
A debacle for what should have been an honest, open and significant process that could have removed the blight on the lives of people with ME caused by the last fourteen years of flawed guidelines being propped up by an out of date mentality in the UK.

We described this period as a veritable omnishambles [6].

This is not what one should expect from a publicly funded organisation - especially one that continues to exert so much influence on patients' lives.

NICE
The NICE press release contains the same disingenuous spin that has characterised their activities since 17 August.

The claim by NICE today that they “know that people with ME/CFS have had difficulty in getting their illness acknowledged” is a disgraceful deceit from an organisation that has maintained a flawed set of guidelines for fourteen years with little concern for the “difficulty” faced by people with ME and their families.

In communications with NICE guidelines directors IiMER requested that the dangerous recommendations for CBT and GET were removed from the 2007 guidelines whilst the guidelines review was underway due to the harm that they were doing and had done [7, 8]. NICE declined.

The existing guidelines and their harmful recommendations have been left in place for fourteen years causing untold damage to patients – not just in the UK but also in countries that have mistakenly adopted the NICE guidelines as some sort of “gold standard”.

NICE is an organisation that has had no scrutiny of its operation and seems unaccountable to anyone for its poor performance.

The Guidelines
So to the updated guidelines.

When a national organisation that has been given responsibility for clinical excellence and care announces that a new set of guidelines for a disease is to be created, following fourteen years having passed since the last version was published, then it might be considered to present a great opportunity.
Indeed, Invest in ME Research had campaigned for, and welcomed the review.

Here was an opportunity to evaluate new research, to document and recommend new treatments and practices, and to introduce new recommendations and guidance in order to remove flaws in the previous outdated guidelines.
After all, new research into the disease would inevitably have taken place during those fourteen years that would necessitate modification, and effective treatments may well have become available.

It is a damning indictment of the state of affairs regarding ME in the UK that the updated NICE guidelines can do no such thing.

Instead, the guidelines document of 2021 is only able to attempt to undo the damage done by inaction, ignorance, apathy and negligence during the past 14 years.


The 2021 document stands as a testament to fourteen years of nothing much changing for people with ME, fourteen years of failure from governments and establishment healthcare and research organisations in treating this disease.

It is disappointing, though not surprising, that it took so long to accept what some organisations such as Invest in ME Research have consistently said - that there is no reliable evidence that Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) show any benefit whatsoever for ME/CFS patients.
Quite the contrary.

These new guidelines should have gone further and removed ALL lengthy discussion on physical activity and a “new type of CBT” rather than retain one flawed area of the 2007 guidelines and trying to justify its retention by saying it is personalised and to be

offered to those who ask for it.

Despite no good evidence to justify CBT NICE decides that it wishes to keep it for those who want it...What sort of guidance is that?! Either they have evidence or they do not.

There will be plenty of work for those healthcare professionals involved in ME/CFS in correctly diagnosing and monitoring patients as well as helping out with aids and benefits instead of trying work out how to offer personalised physical activity and CBT.
The guideline should have stood by its evidence findings to allow a completely fresh start. Instead, we have a fudge and new terms such as ‘person centred energy management’ appearing. We wonder how that will be implemented.

The charity strongly objects to the ridiculous special mention of the Lightning Process, a trademark [pyramid] business in these ME/CFS guidelines.
There is absolutely no point in giving any publicity to a process that caused a reprimand to be issued by the Advertising Standards Authority for making unsubstantiated claims.
The “Do not offer” statement should apply to all alternative therapies – or should not even be in this document.

The main guidelines document now contains some common sense approaches to treating ME/CFS patients and the acceptance that patients are able to refuse any “therapy” (with the implication that they should not suffer consequences from insurance companies).
However, there remain major question marks on how resource will become available to retrain healthcare staff – both with regard to the disease and with regard to prejudiced views of the disease that have been allowed to be maintained for so long by the lack of action from governments, research councils, chief medical officers and institutes of national healthcare – and NICE.


These updated guidelines should not be afforded unequivocal support simply because one deleterious recommendation for treatment from the flawed 2007 guidelines is removed and an impression is given of watering down another.
Rather patients and carers should feel aggrieved and angry that nothing has changed in fourteen years for those who have this disease.

One needs to view the 2021 guidelines in the context of what preceded them and remembering all of the harm that has been
caused since 2007.

People with ME should expect that their illness would be taken seriously by the medical profession as the neurological disease that the WHO recognises and that research would be properly funded to facilitate early diagnosis, effective treatment and, hopefully, cure(s).
That has patently not occurred in the past decades.

The 2021 guidelines could have been written in 2007, such has been the lack of progress. In fact, had NICE listened to patients then and provided the 2021 guidelines in 2007 then much of the ignorance, stigma, clinician-patient antagonism, severe harm to and possibly even deaths of people with ME could have been avoided.

Instead, people with ME have had to live with this dystopian healthcare provision in the UK.
They have had to endure establishment games for 14 years since the previous 2007 guidelines for ME were published. Fourteen years of the harm caused by flawed NICE guidelines, fourteen years and more of the MRC’s god-forsaken “expert” panels and barren and disingenuous ‘collaboratives’, fourteen years of UK CMO ignorance and apathy, and decades of entrenched views among royal colleges and institutes which had no basis in reality but managed to support the careers of some.
It must not continue.

Far from being the gold standard for guidelines for other countries, we would suggest that agencies developing guidelines in other parts of Europe should consider their own path and not blindly follow a UK organisation that has twice been taken to, or threatened with, a judicial review - by patients!



The 2007 NICE guidelines are there as the epitaph to the failure of NICE, the MRC, the UK CMOs, royal colleges and the government.

The 2021 NICE guidelines document shows how bare the landscape has been, and still is for people with ME in the UK.

Fourteen years with little progress.
An appalling legacy for those who have been in positions of influence and responsibility over the past decades.

Perhaps the acceptance that the UK healthcare has failed patients for fourteen years should now be a call to action to treat ME with the urgency and the resource that has rapidly been made available to treat long covid.
NICE might begin that call by issuing a formal apology for their part in the misery of the lived experience of people with ME over the past fourteen years!


So now we start again - from the position that we were in in 2007.
The development and publication phases of an updated set of guidelines have finally been completed.
Now a new phase is entered – implementation.

Though we saw nothing of great accomplishment in the final guidelines (we commented fully in our response to the draft guidelines [9]) the 2021 version may, nevertheless, allow a start in resetting the environment to reflect a more realistic picture of the disease.

Time will tell if real change occurs. Nothing can be taken for granted and the history of ME dictates that caution and vigilance would be the best approach as nothing is certain.

As we commented in the The Status of Research, Treatment and Perception of Myalgic Encephalomyelitis (ME) in UK report of 2018 [10] -


“In 2007 Invest in ME Research issued a status review of these recommendations from the Chief Medical Officer’s Report.
None of the recommendations had been implemented at that time.
In 2018 we revisited the CMO report and the recommendations from 2002 and it is clear that still none of the recommendations have been implemented.”
The future for people with ME still, tragically, remains uncertain following the publication of these guidelines – and lies in the hands of others and their interpretation of these guidelines.

The Chair and Board of Invest in ME Research



October 2021

.
 

Countrygirl

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Phil [I-can-pass-my-spirit-into-your-body] Parker of the Lightning Process is not happy but, fortunately, is able to quote supportive statements from the Royal Colleges for his particular form of New Age woo.........

 

Countrygirl

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BrightCandle

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https://www.meaction.net/2021/11/01/send-a-message-of-thanks-to-nice-committee-members/

Talk about failing to understand anything about what just happened. The guidelines got published but they contain nothing positive for ME patients and with bundles of medical institutions refusing to implement the removal of GET and CBT the committee members main success here is simply the removal of harmful practices while giving just enough wiggle room for CBT and GET to be renamed and patients still abused. Thanks I guess.
 

Countrygirl

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BMJ ARTICLE

https://www.bmj.com/content/375/bmj.n2647

Full text:

ME/CFS: Exercise goals should be set by patients and not driven by treatment plan, says NICE

Graded exercise therapy (GET) should no longer be used to treat patients with myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS), says the National Institute for Health and Care Excellence in long awaited updated guidance.1

Patients may still be offered exercise programmes provided they are not based on fixed incremental increases in physical activity or exercise. Instead, programmes should be based around person centred energy management, which is a self-management strategy led by the patient with support from a healthcare professional in an ME/CFS specialist team, the guideline advises

Energy management should consider all types of activity (cognitive, physical, emotional, and social) that help patients learn to use the amount of energy they have, while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limits.

Cognitive behavioural therapy has sometimes been assumed to be a cure for ME/CFS, the guideline acknowledges. Now it should be offered only to help people manage their symptoms, improve their functioning, and reduce the distress associated with having a chronic illness.

The final 2021 guideline shows a real change of emphasis from the previous guideline published in 2007, which said that cognitive behavioural therapy and GET should be offered to people with mild or moderate CFS/ME as the interventions with the clearest research evidence of benefit.2 Rather than a focus on specific treatments, the guidance says, people with ME/CFS should receive individual support tailored to agreed goals, and a range of approaches should be used depending on the patient’s preferences and priorities.

The final guideline is very similar to the draft recommendations published in 2020,3 which were welcomed by patient groups and their representatives who had lobbied for years for the 2007 guideline to be changed.4
New emphasis
In August this year the proposed final guideline prompted the resignation of three members of the guideline committee, and several royal colleges raised concerns about the advice and the processes used to review the evidence.5 As a result, NICE delayed publication.


The guideline was finally published on 29 October after a round table meeting held on 18 October with a range of patient and professional organisations to discuss the concerns. The recommendations are unchanged, but there are differences of emphasis. The final October guideline highlights more clearly that GET means exercise programmes involving fixed incremental increases in the time spent being physically active and that cognitive behavioural therapy can still be used to support patients with ME/CFS but not offered as a cure.

Commenting on the final guidance, Alastair Miller, a consultant physician in infectious disease and internal medicine and previous clinical lead at the Royal Liverpool University Hospital CFS service (2006-14), said, “It is unfortunate that NICE continue to misrepresent GET as ‘fixed incremental increases in physician activity or exercise,’ whereas in practice the approach in most CFS/ME clinics has always been to tailor increasing activity to the individual’s needs and requirements in line with their current recommendations.

“It is unfortunate that so much emphasis is given to working ‘within current energy limits’ rather than a gentle and controlled pushing of those limits. However, it is to be welcomed that clinics will still be able to provide appropriate personalised activity and exercise programmes for those patients in whom it is felt to be appropriate.”

Relieving symptoms

The final guideline emphasises that while ME/CFS symptoms can be managed, the condition currently has no cure, either pharmacological or non-pharmacological.


Miller, previously principal medical adviser for Action for ME (2010-16) and former chair of the British Association for CFS/ME (2013-16), commented, “They say that exercise [or] activity cannot be regarded as a ‘cure’ for CFS/ME, and yet they accept that it may relieve symptoms. There is no such thing as asymptomatic CFS/ME; therefore, if you have no symptoms you have no disease.”

Trudie Chalder, professor of cognitive behavioural psychotherapy at the Institute of Psychiatry Psychology & Neuroscience at King’s College, London, said, “The NICE guidelines for CFS/ME are at odds with the research evidence. Researchers from different institutions in different countries have found graded exercise therapy and cognitive behaviour therapy to be effective for some patients with CFS

“Evidence has shown they reduce fatigue and improve functioning without harm, if delivered by trained therapists in specialist clinics. Being a clinician and researcher in this field, I can’t help but think clinicians will be confused by this message from a respected organisation.”

The final guideline lists the symptoms of ME/CFS as debilitating fatigue that is worsened by activity, as well as post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties (“brain fog”), and it says that diagnosis can now be confirmed after three months rather than six months of persistent symptoms. The guideline committee agreed that removing this delay to diagnosis might enable earlier management and could potentially improve longer term outcomes.

Better acceptance

Charles Shepherd, medical adviser to the ME Association and a former member of the guideline committee, said, “This is a very special day for people with ME—publication of a new, evidence based NICE guideline which confirms that this is a serious and very debilitating medical disease.
“I welcome the emphasis on early and accurate diagnosis and the need to provide early guidance on symptom management when people are not recovering from a viral infection and a diagnosis of ME is suspected.”
Shepherd was “stood down” from the committee by NICE in August because of “continuing conflicts of interest” related to “providing information and commenting on key issues of concern to the ME/CFS patient community” while serving on the guideline committee.6


David Strain, medical adviser at Action for ME, said, “The guideline should drive better acceptance of ME as a serious medical condition and encourage doctors to personalise care based on individual needs. It is a real opportunity for doctors to transform the care patients receive.”
 

Countrygirl

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Dr Charles Shepherd, Medical Advisor to the ME Association responds to the BMJ article:

Professor Trudie Chalder from King’s College Hospital states that:
“The NICE guidelines for CFS/ME are at odds with the research evidence. Researchers from different institutions in different countries have found graded exercise therapy and cognitive behaviour therapy to be effective for some patients with CFS.​

Evidence has shown they reduce fatigue and improve functioning without harm, if delivered by trained therapists in specialist clinics. Being a clinician and researcher in this field, I can’t help but think clinicians will be confused by this message from a respected organisation.”​

Having carefully reviewed all the very extensive evidence on efficacy and safety for graded exercise therapy (GET) from relevant clinical trials, medical experts and from people with ME/CFS, the NICE guideline committee concluded that in addition to there being no sound evidence for efficacy for GET there was also consistent patient evidence of harm, sometimes serious and persisting, occurring​

Patient evidence on the use of GET was collected by the Forward ME group of charities during the guideline development process (1). This was independently analysed at Oxford Brookes University. 67% of people who had been prescribed GET reported a deterioration in physical health and 53% reported a deterioration in mental health. Many of these people had been under the supervision of NHS referral services for ME/CFS.​

Furthermore, the website for the King’s College Hospital ME/CFS service (2) states under ‘Information for Patients':
"There are some side effects associated with the treatment of CSF (sic). These may include the following:
You will experience an initial increase in symptoms. This is natural, as in being consistent you will be being active when you don't feel like it. You will get more muscle ache, more fatigue etc. Remember - this is the bodies normal response, it does not mean a relapse of your illness.​

Providing that everything has been done gradually, and you have not been over ambitious, this should not be too painful, and it should pass after a few weeks at most".
Treatment programmes that result in symptom exacerbation are not recommended in the new NICE guideline.​

This new NICE guidance should now be acted upon without delay by all health professionals who are managing people with ME/CFS.
References:
1 Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET intervention programmes. Forward ME, 2019
https://meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outc...
2 King’s College Hospital CFS/ME service - Information for Patients:
https://www.kcl.ac.uk/ioppn/depts/pm/research/cfs/patients/self-help
Ends
Competing interests: Member of the NICE guideline committee on ME/CFS from 2019 to 2021​
Link to original news item:​
 

Countrygirl

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What's the repercussion for UK doctors if they don't follow the NICE guideline? If people refuse to change even in the slightest in response to evidence, what happens?
There was a case last week (sorry, I don't have it to hand) where it was made clear by the court that the doctor is liable if they commit harm by failing to follow the guidelines. If they depart from it, they lose/weaken their protection from prosecution/retribution and they have to provide strong evidence to support their failure to abide by NICE's guidelines.
 
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https://www.meaction.net/2021/11/01/send-a-message-of-thanks-to-nice-committee-members/

Talk about failing to understand anything about what just happened. The guidelines got published but they contain nothing positive for ME patients and with bundles of medical institutions refusing to implement the removal of GET and CBT the committee members main success here is simply the removal of harmful practices while giving just enough wiggle room for CBT and GET to be renamed and patients still abused. Thanks I guess.
Great comment. I really don't understand the hopium put out by organisations such as this. Apparently we are supposed to thank NICE, and the committee members for helping 'ensure science won over stigma''.
 
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You might like to join the UK patients on the Royal College of Physicians' Facebook page where we are leaving appropriate comments under the statement they made on Friday. Better be quick as when they read them, I suspect they will be vamoosed and some of us might find ourselves in Facebook jail. :D:D:lol:

https://www.facebook.com/RoyalCollegeofPhysicians

I would but I stopped using CensorBook many years ago after my account was hacked several times.
If you go to CensorBook jail you should see it as a badge of honour.
 

wabi-sabi

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I really don't understand the hopium put out by organisations such as this.
For me the hopeful part is seeing the push back against such a tiny change in guidelines from the RC. This forces the ignorance about ME/CFS into the light for the wider public. It might even prompt some action against the RC view if they speak and act out against the guidelines, forcing people to see just how backward ME/CFS care is in the UK.

Yes, we still have a lot of work to do. Sigh. But this feels to me like the first break in the wall of ignorance.