Letters to Professor Mark Baker at NICE

January 2018

Recommendations from NICE to Use CBT and GET for ME



Correspondence with Professor Mark Baker - Centre for Guidelines Director, National Institute for Health and Care Excellence

In July 2017 Invest in ME Research responded to the NICE 10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis click here

This pdf is an easier format to read is here.

Recently, whilst preparing for the planned Stakeholders' Workshop (16 January 2018) to review the NICE guidelines for ME it has, in our opinion, been necessary to make one request to NICE which we feel cannot await the results of the NICE guidelines review.

We have requested that NICE remove the recommendations for CBT and GET immediately from the existing guidelines due to the possible deleterious effects on people with ME.

This request follows on from our submission to NICE last year where we highlighted the consequences of continued backing for CBT and GET.

Links to Correspondence


Letter to Professor Mark Baker 15th January 2018

Letter to Professor Mark Baker
Centre for Guidelines Director, National Institute for Health and Care Excellence



15 January 2018



Professor Mark Baker
Centre for Guidelines Director
National Institute for Health and Care Excellence

NICE Guidelines for Myalgic Encephalomyelitis (ME)

15 January 2018

Dear Professor Baker,

Invest in ME Research is a UK charity (charity nr 1153730) that seeks to educate and campaigns for biomedical research into myalgic encephalomyelitis (ME). The charity also facilitates and funds biomedical research into ME.

Although Invest in ME Research is a stakeholder in the NICE Guidelines review process, and will contribute to those discussions, we feel there is an urgent matter that needs to be addressed immediately, irrespective of progress with a NICE Guidelines review and separate from the full review process.

This concerns the continuing recommendation for use of Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET) for ME which are still held in NICE Guidelines and still, apparently, being used by doctors treating people with ME.

It must surely be realised by all now that CBT and GET are inappropriate for treating ME and in many cases have proven to be deleterious to the health of patients.

The PACE Trial) [1], which was supposed to prove the efficacy of CBT and GET for ME, has been proven to be flawed [2], possibly fraudulent [3] and a complete waste of tax payers’ money.

Reanalysis of PACE Trial results by Matthees et al (once the data was forced to be released from the authors following a legal challenge) stated -

"This re-analysis demonstrates that the previously reported recovery rates were inflated by an average of four-fold." [4]



The PACE Trial is now being used as an example of how not to perform research – and it is widely seen as flawed and is ridiculed. Several articles by David Tuller academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley, have exposed these flaws and demonstrated that the PACE Trial cannot be considered valid [5]

NICE cannot use PACE for anything other than to reject its previous guidelines comments. Continuing to use PACE Trial references to justify CBT and GET will invalidate any further review.

The reason for sending you this letter now is that we believe a full review of the NICE guidelines that may take two years or more will leave patients exposed to these harmful treatments (CBT and GET) and it is not acceptable.

We stated this in our submission in July 2017 [6] -

“NICE will be accountable if it ignores the advice to withdraw this unsound recommendation. NICE would be negligent.”

“NICE must be accountable for damages, and costs, relating to the burden brought on to patients by this erroneous and negligent recommendation.”

“By ignoring the recent IOM, NIH, AHRQ and CDC decisions to remove CBT and GET from their recommendations and stipulate that the Oxford criteria and research using those criteria need to be abandoned then NICE are negligent.”

You stated yourself [9] that " … the ME/CFS Guideline specifically, …… did not meet our [patients’] needs and it did not meet theirs (NICE’s) either.".

By removing the recommendations for CBT and GET from the existing guidelines now, with an addendum or correction of some sort, it could go a long way to establishing some trust in NICE from patients that was forfeited when the previous guidelines were published and the views of patients were ignored.

It would publicise the fact that NICE are responsible and would avoid future possible litigation from those adversely affected by CBT and GET in the intervening period before a new set of guidelines have been published.

The full review of the guidelines for ME will take time. There would be no excuse not to remove what is already known to be faulty recommendations.

Thank you for taking the time to consider this request,

Yours Sincerely,

Kathleen McCall

Chairman Invest in ME Research
and the Trustees of Invest in ME Research

References

  1. The PACE Trial Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 377: 823–836. doi: 10.1016/s0140-6736(11)60096-2
  2. David Tuller Virology Blog: TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study - http://www.virology.ws/2015/10/21/trial-by-error-i/
  3. Kelvin Hopkins Questions in parliament http://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Commons/2016-11-22/54266/
  4. A preliminary analysis of ‘recovery’ from chronic fatigue syndrome in the PACE trial using individual participant data - http://www.virology.ws/wp-content/uploads/2016/09/preliminary-analysis.pdf
  5. David Tuller articles on PACE Trial

    6. References for David Tuller



  6. http://www.investinme.org/Documents/NICE/Invest%20in%20ME%20Research%20Comments-to-NICE-Consultation-Guidelines-Review-2017.pdf
  7. USA Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to the 2014 ME/CFS evidence review and downgraded CBT and GET - https://www.ncbi.nlm.nih.gov/books/NBK379582/
  8. The CDC has updated their website about ME/CFS to use the 2015 Institute of Medicine report and has removed Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) from its recommendations https://www.cdc.gov/me-cfs/about/index.html
  9. http://www.forward-me.org.uk/25th%20June%202014.htm

Reply from Professor Baker and IiMER Response 16th January 2018



Response from Professor Mark Baker to Invest in ME Research Letter

Following the sending of the letter above we have received the following reply from Professor Baker.

We share this letter as it is of interest for the public and NICE are accountable to the public.

We also share our response to Professor Baker's reply.

Dear Ms McCall

Thank you for your letter.

As you are, I’m sure, aware the NICE guideline on ME/CFS was published before the PACE trial was seriously under way. Our recommendations were based on a body of research which preceded the PACE study. In our most recent review of the guideline, and cognisant of the controversies regarding the interpretation of the PACE results and methods, we assessed the evidence with, and without, the PACE results and the trial made no difference to the conclusions. Therefore, I cannot accept at this stage that reports of flaws in one study invalidate the results of all the studies in this area.

I appreciate that the existing recommendations are a matter of concern to some patients and groups and we will give some consideration to whether we need to modify or omit any of the existing recommendations during the development of the new guideline. We will certainly consult the new Committee members, when appointed, on this and a number of other issues.

In the meantime, I will keep your letter on file for future consideration and reference.

Best wishes

Mark

Professor Mark R Baker
Director, Centre for Guidelines
National Institute for Health and Care Excellence

Invest in ME Research feel this reply is not consistent with expectations from apublic body which is responsible for the health and welfare of sick and vulnerable patients who could be affected by flawed guidelines.

We have therefore given this response to Professor Baker -

Invest in ME Research Reply to Professor Baker - 16th January 2018



16 January 2018



Professor Mark Baker
Centre for Guidelines Director
National Institute for Health and Care Excellence

NICE Guidelines for Myalgic Encephalomyelitis (ME)

16 January 2018

Dear Professor Baker,

Thank you for your prompt reply on this matter. You state in your reply that –

“the NICE guideline on ME/CFS was published before the PACE trial was seriously under way. Our recommendations were based on a body of research which preceded the PACE study. In our most recent review of the guideline, and cognisant of the controversies regarding the interpretation of the PACE results and methods, we assessed the evidence with, and without, the PACE results and the trial made no difference to the conclusions”.

As you will be aware Invest in ME Research challenged that.

It seems very strange that you can state categorically that NICE found no evidence to change the conclusions and, therefore, did not alter the recommendations of using CBT and GET for ME.

However, you are now aware that the NIH, CDC, AHRQ and IOM in USA are not only downgrading CBT and GET but have removed them from as recommendations.

Finland’s Valvira has also now removed the suggestion that CBT and GET be used for ME.

We have to state that we are somewhat shocked by your lack of action.

It is unfathomable why you continue to allow these recommendations for CBT and GET to stand.

The existing recommendations from NICE are hardly “a matter of concern to some patients and groups”! They are, in fact, a matter of life and death for sick and vulnerable patients – those whom even you have admitted have been ill served by NICE guidance.

Perhaps it might be of use for you and your team to read the last post from Anne Örtegren – a brave, severely affected yet articulate patient in Sweden who suffered enormous damage caused, in part, by poor medical advice https://investinme.org/AnneOrtegren.shtml

We wonder if this is the outcome you, and NICE, really wish to risk imposing on ME patients.

To ignore completely the evidence that is in front of you makes you directly responsible for any harmful effects administered by practitioners of CBT and/or GET following referral by any doctor who follows NICE guidance.

Whilst you may be providing cover for establishment organisations and individuals, you are not protecting patients – surely that should be your overarching concern.

What you must do, at the minimum we feel, is to issue an addendum to the existing NICE guidelines which states that not only are patients wanting to remove the recommendations for use of CBT and GET for ME but also that the USA agencies have removed CBT and GET from their recommendations. This will not only give some protection for your own liability but you could actually be saving lives.

We also urge you to rethink your decision.

In the meantime we will advise all patients and their carers to retain a copy of your reply on their files so that, in the event of their being adversely affected by the NICE recommendation to use CBT and GET for ME, they may be able to use your statement to show the abrogation of responsibility by your organisation.

We would also state that this does not bode well for the forthcoming review of these flawed guidelines,

Yours Sincerely,

Kathleen McCall

Chairman Invest in ME Research
and the Trustees of Invest in ME Research

Letter from IiMER to Professor Baker 17th January 2018

Following the stakeholder engagement workshop on 16th January Professor Mark Baker was reported to have told the participants that he and NICE proposed to tear up the existing NICE guidelines.

Invest in ME Research feel this is a remarkable, albeit welcome, statement as it seems to contradict his reply to us earlier in the day.

We have therefore sent an additional letter to Professor Baker in the light of these reported comments.

Invest in ME Research Reply to Professor Baker - 17th January 2018



17 January 2018



Professor Mark Baker
Centre for Guidelines Director
National Institute for Health and Care Excellence

NICE Guidelines for Myalgic Encephalomyelitis (ME)

17 January 2018

Dear Professor Baker,

Thank you again for your reply to our letters.

We apologise for taking up more of your time but there is one issue that has now arisen which we feel needs clarification and action.

At the Stakeholder engagement workshop meeting yesterday you were reported as saying that the existing NICE guidelines would be “torn up” and new guidelines developed.

Yet yesterday, just a few hours before that meeting, you wrote to us and stated –

“In our most recent review of the guideline, and cognisant of the controversies regarding the interpretation of the PACE results and methods, we assessed the evidence with, and without, the PACE results and the trial made no difference to the conclusions”

and that you would

“give some consideration to whether we need to modify or omit any of the existing recommendations during the development of the new guideline”

These remarks seem to us to be contradictory.

If you are now telling participants at yesterday’s meeting that the existing guidelines will be torn up then you are effectively stating that they are of no value.

Therefore, there is no logic in retaining the existing guidelines any longer, which you have previously stated were not effective and which you are now alleged to have said will be completely removed in any case.

If you decline to take action in issuing the addendum that we have requested then the most logical action that NICE must now take is to withdraw the existing guidelines completely, immediately, and inform all doctors across the UK that the existing guidelines are not fit for purpose and the recommendations in those guidelines are not to be used.

This notice should also be communicated around the world to any foreign organisations that have misguidedly used the existing NICE guidelines for their own healthcare systems.

It is better to have no guidelines than to have guidelines that will potentially harm patients.

Although withdrawal of the guidelines may be embarrassing for NICE this action would avoid the need to add the addendum that we previously requested and would serve patients – the very people that the guidelines should help at the end of the day.

This action could also demonstrate that your words mean more than the meaningless platitudes that patients in UK have long been accustomed to from establishment organisations over the last decades. You can change that – Tear It Up!

Failure to withdraw these now would invite speculation that you are leading patients down one of the longest garden paths in history,

Yours Sincerely,

Kathleen McCall

Chairman Invest in ME Research
and the Trustees of Invest in ME Research

Reply from Professor Baker and IiMER Response 18th January 2018



The response from Professor Mark Baker to Invest in ME Research Letter of 17th January 2018

Following the sending of the letter above we have received the following reply from Professor Baker.

We share this letter as it raises further issues for people with ME and their families and is something that we feel we need to respond to.

It seems there are some major elements of misinformation either being planted or being assumed.

We also share our response to Professor Baker's reply.

Dear Kathleen

I did indeed say that we will fully replace the guideline and start again and that is a key component of our efforts to improve the situation for people with ME. However, it does not mean that we reject everything that is in the current guideline.

The existing recommendations are carefully nuanced and crafted to give power and choice to patients. The problem is, I believe, in the unthinking and ill-informed manner in which the recommendations are imposed on people for whom they are not intended and/or not suitable. To this extent, some clarification may be required prior to the completion of the new guideline.

I was struck by some of the stories at the workshop about the misuse of the current recommendations and the disturbing extent to which they are imposed on people who are unlikely to benefit from them and for whom alternative approaches would be sensible. However, scrapping the entire guideline now would be massively counter-productive as it would almost certainly result in the withdrawal of the already dwindling number of services available to people with ME. Therefore, a rather more limited approach would be required to protect what is good whilst modifying what may be harmful.

I am grateful for the information which you, and others, have furnished us with to give some context for how we might modify these treatment recommendations in the current guideline. In particular, the application of treatments like GET to patients who were not eligible (because of their level of disability or because the intervention was simply not acceptable) for the trials which evaluated GET is a practice we might advise against. The current wording makes clear that patient agreement is required but I imagine that consent is not usually sought and that patients are not considered to have rights to refuse (which they invariably do have in fact).

All I can offer at this stage is a promise to look at this again with some urgency in the context of your submissions, and the many examples given to us at the workshop, of the inappropriate imposition of treatments which are neither acceptable nor suitable for the people concerned.

Best wishes

Mark

Professor Mark R Baker
Director, Centre for Guidelines
National Institute for Health and Care Excellence

Whilst not doubting Professor Baker's sincerity in wanting to address some of the concerns patients have we feel there are still some influences on decision-making which are not being made public.

We have sent the following response to Professor Baker on 18th January 2018 -

Invest in ME Research Reply to Professor Baker - 18th January 2018



18 January 2018



Professor Mark Baker
Centre for Guidelines Director
National Institute for Health and Care Excellence

NICE Guidelines for Myalgic Encephalomyelitis (ME)

18 January 2018

18 January 2018

Dear Professor Baker,

Once again thank you for your reply. We do appreciate you taking time to reply and we do not wish to draw this out any longer than is necessary.

However, we have to say that neither will we let this rest whilst the consequences for people with ME are so serious.

Other organisations may passively follow the establishment methods and line that has so badly served patients over the last decades.

We will not.

You will leave your position with NICE at some point soon and be replaced by another person who may not adopt your line of thinking or bring with them any sense of serving the patients and their families.

Therefore, it is imperative that we underline these points at this stage and it is why we are using your time and ours to try to make these points.

As we stated previously, if you accept that you will fully replace the existing guidelines to improve the situation for people with ME then we really cannot understand why you cannot commit to either adding the addendum that we requested to remove both CBT and GET as recommendations for treating ME, or removing the existing guidelines already.

Stating that replacing the existing guidelines is a key component of the efforts to improve the situation for people with ME is welcome.

However, our request to remove the guidelines does not preclude you from taking any good points that may be present in the existing guidelines (such as the possibility for patients to decline any “treatment” offered if they do not believe it will help them – without being penalised by insurance companies or government departments, or the corporate parasites doing their work) and retaining them for new guidelines.

If, as you state, the existing recommendations are “carefully nuanced and crafted to give power and choice to patients” then why are you hearing of these awful stories from patients who are on the receiving end of the treatments being forced on them due to NICE guidance?

Why is it that, during all the years since the existing guidelines have been operational, we have continually heard from patients and their carers of the deleterious effects of having CBT and/or GET forced on them with the threat of benefits being removed?

The existing guidelines have done little to help doctors and done nothing to help patients – and the doctors themselves seem totally unaware of these “nuances” to which you refer.

You, yourself, admit that you have disturbing evidence of these treatments from patients about the “extent to which they are imposed on people who are unlikely to benefit from them”.

Yet even from the very time that the existing NICE guidelines were being drafted, as well as when they were issued, Invest in ME/Research has objected to CBT and GET being present.

NICE knew this long before the existing guidelines were issued. NICE were being told that CBT and GET were not applicable as treatments for ME during their development. [1]

This is a not new knowledge and ME patients even took NICE to a judicial review of the existing guidelines.

Therefore, it should be no surprise to hear of these stories from patients of how badly the recommendations of CBT and GET have affected their lives.

NICE chose to ignore patients’ voices for the existing guidelines both when they were drafted and when they were made operational.

We feel this may be occurring again now.

We do not believe that the problem lies in the unthinking and ill-informed manner in which the recommendations are imposed. We believe it is because doctors, who have little time for patients in general due to their heavy workloads, are presented with flawed recommendations by NICE and have no choice but to use them.

We have experienced this ourselves and all patients know of this.

The problem lies with NICE and the heavily BPS-influenced guidelines that were created – against patients’ wishes.

We do not believe clarification is needed in this context.

We believe CBT and GET need to be removed now.

You state that scrapping existing guidelines would be “massively counter-productive as it would almost certainly result in the withdrawal of the already dwindling number of services available to people with ME”.

We doubt that. In fact, we totally disagree with that assessment.

There are indeed few services for ME (due to decisions and policies of UK governments, MRC, NICE, Chief Medical Officers and certain royal colleges and individuals within them) but those that do exist have been based almost entirely on flawed CBT/GET clinics that were set up, again against patient voices, to continue to offer these flawed treatments.

We know that doctors feel constrained by the NICE guidelines and the recommendations of CBT and GET and they feel unable to offer more.

Removing the existing recommendations for CBT and GET, or removing the existing “unsatisfactory” (your words) guidelines completely would leave the doctor able to offer more flexibility in performing tests, in looking for treatments, in appraising themselves of research and generally treating the patients as human beings with a health problem to resolve.

It would also improve the situation for patients – immediately – as no self-serving insurance company could force CBT and GET on to patients before paying deserved benefits, using the excuse that NICE have recommended these flawed treatments.

You would, in fact, be performing a huge favour for ME patients by removing the existing guidelines.

It would also send out the message, loudly and clearly, that patients have been ill served by existing guidelines and recommendations and that you are indeed now going to focus efforts on relevant and effective guidelines that benefit patients.

It would send a signal to those establishment organisations and individuals who have benefited from the continued prescribing of CBT and GET that the game is up.

Add the addendum to remove recommendations for CBT and GET or remove the existing guidelines now – it is the only logical course of action that can be taken if the welfare of patients is really the prime objective.

You (and NICE) will gain enormous respect from the patient community by taking this bold action.


In addition, let us make one point – and we wish to stress this.

You cannot remove GET and yet still retain CBT as a recommendation.

Both of these recommendations must be removed.

By retaining CBT as a recommendation then this only helps those organisations and individuals who continue to promote biopsychosocial theories about ME for their own vested interests and will continue the threat to the welfare of ME patients.

CBT in the existing NICE guidelines is tightly connected to GET as it asserts that fear of exercise and false illness beliefs perpetuate the condition.

CBT and GET are the two major components causing the damage being done to people with ME. Their continued use affects everything. We do not accept that “in particular” GET is not acceptable.

CBT must be removed also in parallel with GET.

By leaving CBT as a recommendation, you will leave the door open for continued funding of the same bogus research that has monopolised and compromised the lives of people with ME and their families for so long.

It is unacceptable.

We are telling you directly that leaving both CBT and GET as recommendations in existing (or future) guidelines will damage the health of people with ME.

If the treatments mentioned (CBT and GET) are already accepted to be “inappropriate”, “unacceptable” or “unsuitable” as recommended by the existing guidelines then your (and NICE’s) duty and obligation to sick and vulnerable patients is to remove them immediately.

There is no other logical course to take.

From your letters we accept that you are sincere in your intent to modify guidelines for the benefit of patients.

Yet there just simply is no excuse to retain CBT and GET.

Please do not let this opportunity pass to help the current situation for ME patients, before you move on to another position.

Leaving the current recommendations for CBT and GET in place for another two years whilst a new set of guidelines are developed would be negligent.

This is something you can do now for ME patients that will have benefits for the whole ME community - immediately.

Perhaps no single act in current times could be seen as better serving the health of a large section of the population (which surely is NICE’s remit) than acceding to our request to add an addendum to the existing guidelines to revoke the recommendations for CBT and GET, or to remove the existing guidelines completely.

We thank you again for your time in receiving and reading our letters.

We assure you that our only motives are concerned with the welfare and the future of people with ME and their families,

Yours Sincerely,

Kathleen McCall

Chairman Invest in ME Research
and the Trustees of Invest in ME Research

References:

1 http://www.investinme.org/iime%20campaigning-nice-guidelines%20iime%20response.shtml



Reply from Professor Baker 19th January 2018
and IiMER Response and Summary


Summary from Invest in ME Research 9th February 2018

Following the sending of the letter above we received the following reply from Professor Baker on 19th January 2018.

Dear Kathleen

Thank you again for your strongly argued case.

I have set out my position and am not, on my own account, able to act as you wish. However, we are actively considering the issues raised at the workshop and will advise our Board, through the Senior Management Team, on any action which we might take for the benefit of patients prior to the completion of the new guideline.

I would, however, have to counter your suggestion that no harm would be done by withdrawing the guideline in full. Despite its unpopularity with patients, which we clearly now empathise with, the majority view has always been that it has done some good, not least by legitimising the diagnosis and ensuring that patients had access to services. We have repeatedly been told that the entire support structure (from service) for patients would disappear if the guideline were withdrawn a s commissioners are seeking every opportunity to disinvest at present. I have also received representations about the CBT recommendations so be assured that we are looking at those too.

As I said before, the guidance is very carefully worded to protect patients and we are deeply concerned at the actions of some service agencies (health care commissioners, children’s services, schools and benefits agency amongst others) which clearly do not represent the wording and intentions of the guidance. However, this is not something which NICE has direct influence over and I can only suggest that you direct your ire on those responsible for irrational decisions and the misquoting of our guidance.

I don’t think I can add anything to the position I have outlined. We are drawing together all the feedback for the workshop, together with the written representations made by yourselves and others, and will discuss at the highest level at NICE what remedial action to help patients we can take in the meantime. Therefore, I am going to ask Helen Finn in our enquiries team to handle any future correspondence.

Best wishes

Mark

Professor Mark R Baker
Director, Centre for Guidelines
National Institute for Health and Care Excellence




Following the exchange of letters with Professor Baker we have summarised our views on the statements we have received.

The replies we have received force us to be very concerned about influences still affecting NICE guideline development.

We have sent the following response to Professor Baker on 9th February 2018 -

Invest in ME Research Reply to Professor Baker - 9th February 2018



9 February 2018



Professor Mark Baker
Centre for Guidelines Director
National Institute for Health and Care Excellence

NICE Guidelines for Myalgic Encephalomyelitis (ME)

9 February 2018

Dear Professor Baker,

Thank you again for the time given to reply to our email.

We understand that you now wish to halt further communication on the issues that we have raised and move all discussions under the umbrella and scope of your planned workshops for a full replacement of the existing guidelines – which you have indicated will be “torn up”.

We do not expect you to reply to this – but we do feel it worthwhile for all patients and for the NICE comms to see our summary of the points coming from your emails and, subsequently, the likely effect on the two-year period that the review will use and which may or may not result in improvements for patients.

We include that summary below.

Thank you again for taking the time to reply.

We hope that the comments and proposals we have made will be acted upon by NICE immediately and not wait until one of the planned workshops, or wait for more harm to be done to patients.

NICE must serve the needs of patients.

Unfortunately, we fear that NICE will not do as we suggest and will not act for the interests of patients.

We hope that you prove us wrong.

We wish you well in whatever undertaking you pursue post-NICE - and perhaps will reflect on the effects that NICE decisions have on a population of very ill patients who have been so poorly served by establishment organisations in the past,

Yours Sincerely,

Kathleen McCall

Chairman Invest in ME Research
and the Trustees of Invest in ME Research

Summary

  • Professor Baker believes withdrawal of the guidelines would result in the entire support structure being removed.
    He has said that the services that are now provided to patients will be withdrawn if the existing guidelines are withdrawn immediately.
  • We have said we disagree with that.
    The reality is that the services offered currently are sparse at best and detrimental to patients’ health at worst and rarely meet the needs of patients.
    It must surely be recognised that, in fact, there is a distinct lack of services for ME patients, then we do really think it again illogical to worry about services disappearing.
  • As all doctors will be told that a new set of guidelines will appear then new services will result from that.
    CCGs still have a responsibility to patients.
    In addition, we have suggested that NICE has a choice of action – if NICE does not wish to remove the existing guidelines then just add the addendum that CBT and GET are no longer valid recommendations.

    The extremely poor or inappropriate services currently offered should not be a reason to retain flawed guidelines that harm patients.
  • Professor Baker states that “the actions of some service agencies (health care commissioners, children’s services, schools and benefits agency amongst others)”....“is not something which NICE has direct influence over”.
  • Yet NICE also seem to be saying that NICE guidelines are responsible for services being provided because they will disappear without them – yet at the same time claiming that NICE has no direct influence over those services using them.
    It is hard to follow this reasoning.
  • The actions of some service agencies (health care commissioners, children’s services, schools and benefits agency amongst others) are the direct result of the NICE guidelines and the recommendations therein and NICE must be held accountable and take responsibility. How it is felt appropriate for NICE to abrogate its responsibility is very odd – NICE has been told by Invest in ME that the recommendations in the guidelines were inappropriate for ME at the time that the existing guidelines were being developed.
  • Despite admitting the unpopularity of the guidelines with patients, which Professor Baker and NICE "clearly now empathise with", Professor Baker states that the majority view has been that they have done some good.
  • The guidelines must surely be created to benefit patients.
    Professor Baker admits that they are unpopular with patients.
    Yet patients are only offered empathy - not action.

    To what majority view is Professor Baking referring?
    Is the majority view that of doctors? We doubt it!
    Is the majority view that of the psychiatrists who have so dominated the debate regarding what guidelines are imposed on people with ME, and what research is to be funded?
    This seems a very odd conclusion in the circumstances.

    Mere words being thrown around without any substantiation or detail is not just careless - in this situation it is disingenuous and maybe even dishonest.

    If Professor Baker and NICE state that a majority view supports the retention of the existing guidelines then they must provide details of whom that majority consists of.
    For it is not amongst patients.
  • Professor Baker believes that the guidelines legitimise the diagnosis.
  • Yet how could that be when few services have been offered, when the services that are offered are inappropriate and when Professor Baker acknowledges the horror stories confronting him where patients are not treated seriously?

    How can it be when the diagnosis of ME is still an almighty mess?

    In short, we contend that the NICE guidelines have done nothing to legitimise the disease.
    In fact, they have maintained an ignorance of the disease and allowed patients to be harmed - and continue to allow patients to be harmed.

    Legitimation is not what patients feel.

    We also contend that doctors have been ill served by these existing guidelines and cannot help their patients.
    Patients do not feel legitimised.
    After two or three decades of seeing this disease mishandled and starved of funding for proper research then we can attest to the fact that it has been far from legitimised.

    Even the main protagonists of the BPS ideology, an ideology that has so completely raped this illness with its misinformation and vested interests, have stated that they do not see ME as being a disease – but instead a behavioural illness that can be cured by quack treatments.

    The existing NICE guidelines have done nothing to legitimise or help ME patients and the services that are on offer are mostly inappropriate or sparse – influenced totally by the existing NICE guidelines.
  • Professor Baker has stated that the existing guidance is carefully worded with the implication that doctors are somehow not only aware of the nuances but are also understanding them.
  • We have to disagree.
    If NICE recommend CBT and GET and if these therapies harm patients then no amount of crafted wordsmanship in the world will avoid the situation where patients are harmed.
  • We have stated that the “nuances” and “craftsmanship” of the wording in the existing NICE guidelines to which Professor Baker refers are lost on doctors, and on almost everyone except NICE.
  • Professor Baker states that the (existing) guidance is very carefully worded to protect patients and are ""deeply concerned"" at the actions of some service agencies (health care commissioners, children’s services, schools and benefits agency amongst others) which clearly do not represent the wording and intentions of the guidance.
    Professor Baker then states that this is not something which NICE has direct influence over and can only suggest that we direct our ire on those responsible for irrational decisions and the misquoting of our guidance.
  • This is an astonishing statement to make - and far from true.
    Of course NICE directly influences what doctors prescribe.
    Absolutely NICE has direct influence.

    It is NICE who are responsible for the recommendations which doctors are compelled to take into account.
    This statement demonstrates that NICE still really has no idea at how much damage these existing guidelines have done, and no idea of what damage they continue to do.
  • Professor Baker suggested that we direct our ire on those responsible for irrational decisions and the misquoting of our guidance.
  • Our "ire" is actually directed at those responsible for irrational decisions or decisions that make ME patients worse.

    Professor Baker admitted that the guidelines will be replaced entirely.
    Professor Baker has agreed that CBT and GET are perceived and experienced by patients as harmful
    We believe that Professor Baker accepts the claims that patients have been harmed by CBT and GET

    It therefore defies logic to retain harmful recommendations for two more years or more- when it is clearly understood that patients are being harmed by these recommendations.
  • Professor Baker stated that the PACE Trial has had no effect on the recommendations of NICE (despite last summer the surveillance review quoting the PACE Trial).
  • In our letter to Professor Baker we did not refer to PACE as being the base of evidence for NICE guidelines.
    We only intended to refer to PACE in case Professor Baker came back to us to deflect our argument that CBT and GET need to be dropped by referring to PACE.
  • Yet NICE did use it to base its decisions in the surveillance review of 2017


  • We have stated it is illogical, and harmful to patients, that NICE retain the existing guidelines when it is admitted they are not fit for purpose, are not what patients want and will be discarded in any case.
  • We have stated that there is no rational reason to maintain the existing guidelines if they do harm and that, at the very least, NICE must follow what USA have done and remove recommendations for using CBT and GET as treatments for ME with an addendum to the existing guidelines.
  • We have requested that this addendum for removing recommendations for CBT and GET is communicated to other healthcare agencies around the world who have misguidedly used the existing NICE guidelines as any basis for their own treatment of ME patients.




  • We began this series of letters to Professor Baker due to the comments attributed to him and NICE. These comments have made us wonder how these would be translated into action.
  • Professor Baker’s reply to us – a few hours before the stakeholder meeting – clearly seemed to be contradictory to the comments that Professor Baker made to the participants in the stakeholder meeting and raised major concerns for us as to the actual way NICE were intending to proceed.
  • This, and further replies to our initial request to remove CBT and GET from existing guidelines, baffled us.
  • The fact that Professor Baker has stated that the existing NICE guidelines will be torn up indicates this realisation that NICE and the existing guidelines have failed.
  • What patients have said has proven to be true. Yet NICE did not listen.
  • We detect even now that these messages still have not been taken on board.

  • Comments such as “we will tear up” the existing guidelines need to be translated into immediate action.

  • We have words from NICE - but no action.


  • NICE must separate the decision on the continuation of the existing guidelines from the review of them.
    These are two separate matters – linked by the fact that NICE has already decided to tear up the existing guidelines and that Professor Baker accepts that CBT and GET are harmful to ME patients.
  • The existing guidelines must be withdrawn or NICE must add an addendum that CBT and GET are no longer recommendations.
  • The refusal to add an addendum to existing guidelines to remove BOTH CBT and GET is illogical in the context of the remarks made by Professor Baker/NICE.
  • The refusal to withdraw the full guidelines whilst they are torn up and new guidelines developed also carries a level of illogical reasoning.
    Professor Baker has admitted the existing guidelines are unfit,
    he has accepted the horror stories of patients being coerced into trying CBT and GET and being harmed by them,
    he has heard of insurance companies denying benefits when people refuse to agree to try these flawed theories recommended by NICE.
    In all of this how can it be logical, or moral, or safe, to retain these existing guidelines, and especially the disastrous and damaging recommendations for CBT and GET?

    If one takes an example.
    If a drug is recommended by NICE for a disease and some time later the drug is found to be harming patients then surely NICE would take steps to remove that drug.
    They would not retain it as a recommendation, to be in use for two years whilst they developed a new guideline for the disease.
    To avoid further harm to patients they would remove the drug immediately.
  • This is the same situation that NICE now face with CBT and GET for ME.



  • Professor Baker has written to IiMER that he
    “will discuss at the highest level at NICE what remedial action to help patients we can take in the meantime.”

    We hope that this will result in issuing the addendum to the existing guidelines that removes CBT and GET as recommendations for ME – or otherwise the withdrawal of the existing NICE guidelines for ME immediately.
  • We do not share the euphoric tributes to NICE for arranging a workshop where the audience is told everything that they want to hear.
    We do not feel we have that luxury.
  • Years of experience of establishment tactics involving wasting several years on initiatives that are already designed to deliver nothing of value (MRC “expert” panels, cmrc, mega, etc.) have made us wary of the corrupt systems in place.
  • Based on their track record NICE do not yet deserve any such trust.


  • ME patients have had very little bargaining power over the last decades thanks to the insidious and immoral network of BPS protagonists who have influenced all policies on ME in the UK and taken over decision making in weak and apathetic research councils and government departments.
  • What patients have been able to retain is the ability to give or withhold their trust in new initiatives that promise change to improve their lives. In the world of social media, where the playing field has been levelled in recent times and allowed patients to challenge biased research, this provision of trust by the patient community can be a useful commodity.
  • We therefore do not give NICE our trust.


  • Our recommendation to ME patients and their families is not to trust comments by NICE and not to trust NICE at all – until the day arrives that NICE actually deliver and operationalise guidelines for ME that really do reflect the reality and needs of ME patients and their families.
  • Currently that date would be somewhere in two years time.


  • NICE can bring forward that date by acceding to our request to add an addendum immediately to the existing guidelines to remove recommendations for BOTH CBT and GET - or by withdrawing the existing guidelines for ME immediately, and issuing a press release to doctors in UK and abroad that NICE has found the existing guidelines to be unsatisfactory, that they are going to be torn up and completely revised.
  • If NICE do this then trust will surely be given by ME patients.

  • Sir Andrew Dillon might even find it within himself, on behalf of NICE, to issue an apology to ME patients for the wasted years and the distress and the harm which the existing guideline recommendations have caused.


  • If NICE do not take this eminently logical and fair decision immediately then there is no reason to give that trust.
  • We really do hope that NICE now act in a logical and fair way with the patients in mind - uninfluenced by the evil of the BPS network that has been allowed to flourish over the last decades.


  • Add the addendum to remove CBT and GET – or Tear It Up!
  • Now!

  • Finally, look at a communication below, from a patient, that has come to Invest in ME Research in the last month - a letter which neatly describes the appalling consequences of recommending CBT and GET - something for which Professor Baker and NICE cannot pass on responsibility to others.

    This is the result of NICE's recommendations in their existing guidelines - and this just underlines everything we have been trying to make Professor Baker, and NICE, understand.

To Invest in ME Research


I have been closely following the continuing correspondence in relation to the call for revision of the NICE guidelines.

In particular the removal of CBT/GET.

I have had M.E. for almost four years and am quite severely affected.

I am housebound most of the time and often bedbound.

I was previously a 'high flyer' (my neurologists' words) and a civil servant with a social work background.

Due to my illness I am no longer able to work, and have just been through the very painful process of applying for ill health retirement.

My pension provider (through the (name provided) pension scheme) has a two tier system for pension awards in the circumstance of ill health retirement.

I have undergone five medical assessments during the process and have been assessed as permanently incapacitated in terms of employment.

However, as I have not completed the treatment, as recommended in the NICE guidelines, I cannot obtain the higher rate pension.

The treatment namely being CBT and GET.

I have engaged with the specialist M.E. service in (location provided) but was unable to continue as attending sessions made me more unwell.

I tried CBT through my local mental health service, attending three out of six sessions, this made me more unwell and put me back into bed for weeks.

I am in receipt of the highest rate of both ESA and PIPS.

These were both awarded following the first medical assessment, which I understand is not the position for far too many M.E. sufferers.

I have taken my ill health retirement case to appeal within my pension service.

The position of the original decision not to award me the higher rate pension has been upheld on the grounds that I have not completed CBT and GET.

My pension provider will now escalate my appeal to stage two of the process.

However, the decision makes it clear that, in order to succeed, I need to prove that I have completed CBT and GET.

I am faced with a position that is unfair and takes away any right I have not to undergo treatment that exacerbates my illness.

I have had support from my union (name provided), however they aren't familiar with the fight that M.E. suffers like myself face.

I have previously had a life where i travelled up and down the country for my career, helping to make a difference in the lives of vulnerable children.
I had authority and was very much a professional.
I have always worked within the public sector, both local and central government.
I had a lively social life, always on the go with my partner and family.

Now my life revolves around my bedroom. I rely on pillows, blackout curtains and strong medication to try and control my pain. If I journey out, it is to visit my G.P. which takes around three hours to get me ready for, with lots and lots of assistance from my wife, who is also my carer and carer to our 18 year old disabled son.

I often find it difficult to construct challenges around my illness as i simply can't find the words due to my diminished cognitive functioning. This is one of the hardest symptoms to deal with. The loss of intellect. It's in there somewhere, I'm in there somewhere, but I just can't get the words to make sense.

It is imperative that someone listens to our voices and I am so thankful for your determination in challenging the medical profession around our treatment options.

It will probably be too late to make any difference to my case.
I hope that in the future no one will be penalised for not undergoing treatment that is harmful to their health as a result of your campaigning; that CBT and GET will be removed from the guidelines with immediate effect, rather than waiting for years while the guidelines are revised.

Please please continue the fight for those of us struggling to do it for ourselves




  • Little more needs to be said.

    This letter alone is a testament to the failure of NICE to help people with ME and their families - and a decade on from the creation of the existing guidelines there is enough of an indication that no lessons have been learnt - or any real intent is underway to correct the failings.
  • Throughout our correspondence it seems clear that Professor Baker is oblivious to the elephant in the NICE room - no matter how much damage it is doing to patients.

    We can only surmise that more influential forces are still present, continuing to force more CBT and GET on to patients.

    If that were so it would be shameful.

    CBT and GET must be removed from the existing guidelines now.

    NICE, and those deciding on the future for people with ME, must be held accountable if more people are harmed by retaining the existing damaging recommendations for using CBT and GET for another two or more years.

Further Reading

1/ NICE Campaigning

2/ Notes on BPS Model

Last Update 6/02/2018