NICE Review 2018 - 2020

Inclusion of patient experience research

The additional work on patient choice, which was begun in February 2019 will include a systematic review of primary studies of service user experience. This work focuses specifically on qualitative studies informing questions around choice of treatment, rather than more general studies of people’s experiences of depression (not linked to choice of treatment), which were not felt to be sufficiently relevant to the question. The findings of this work will be considered alongside quantitative results when recommendations are being written and quality assured and presented as such in the final guideline.


25% ME Group submission to NICE Oct 2019




Dx Revision WatchMay 4, 2019

Suspected neurological conditions: recognition and referral NICE guideline [NG127] 

Full Guideline PDF:

Appendices A–R May 2019:

Stakeholder list updated:

Stakeholder Consultation comments and responses:

(Commenters include Action for M.E., Forward-ME.)


Tools and resources:



We, the 25% ME group, would like to make our voices heard with regard to the use of Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) for patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS).

Forward M.E.

Minutes of the Meeting held in Residence 1, House of Lords, Wednesday 21 November 2018, 2.00 pm

The Chairman introduced Dr Alex Robinson and Dr Samuel Stone from the Office of the Parliamentary and Health Ombudsman. Alex Robinson said they would explain what they do and how they look into complaints about public services, and then hear comments and questions from members. He explained that they were the final stage of the complaints process for members of the  public. This includes the NHS in England but there are separate complaints bodies for health services in other parts of the UK. Last year they received about 115,000 calls and enquiries from members of the public about the services.



The Committee will operate as an advisory Committee to NICE’s Board, developing a guideline on ME/CFS.

The terms of reference and standing orders for the Committee can be found in appendix D of Developing NICE guidelines: the manual .




The Department of Health and Social Care cannot pretend to be unaware that the PACE trial has

now become a by-word for poor science in which data has been shamefully manipulated in an

attempt (i) to achieve the pre-determined and promised outcome; (ii) to justify the cost of

£5 million and (iii) to justify the extravagant claims made under the auspices of the Science Media Centre as part of its active

campaign to discredit people with ME when the study was first reported in The Lancet in 2011. Lord

O͛Shaughnessy may be aware of the close link between the psychiatrists involved in the PACE trial and

the industry-funded Science Media Centre, one of whose founder members (Professor Sir Simon Wessely)

directed the PACE trial statisticians in his role of overseeing the Clinical Trials Unit. Lord O͛Shaughnessy

cannot be unaware that the SMC supports and publicly promotes in the media the PACE Investigators͛

disproven beliefs about the nature of ME despite the fact that the PACE Investigators are acting in

contravention of DoH policy.


25% ME Charity response re NICE clinical guidelines committee.

Sir Andrew Dillon,
Chief Executive,
National Institute for Health and Care Excellence 10 Spring Gardens


6th November 2018
Re: ME/CFS Clinical Guideline


Dear Sir Andrew Dillon,
The 25% Group is concerned that with so few representatives on the GDG, who have a biomed- ical understanding of ME, that the new Guidelines will be as equally inappropriate and poten- tially harmful for people, as the current NICE guidance, perhaps even worse.


Patients with ME require a physiological explanation for their symptoms, genuine recognition of the seriousness of their illness and an honest and realistic prognosis. They do not understand why the the GDG appears to be so heavily biased toward a biopsychosocial (BPS) perspective of ME.

Based upon flawed logic, riddled with inconsistencies, misleading statements and glaring meth- odological problems, the BPS approach to ME has caused untold damage, harm to people with Severe ME, over many years of neglect.
Effectively abandoned by the NHS, people with Severe ME, under the influence of a powerful UK “psychiatric lobby” have been left to cope, on their own, often for decades on end, without proper testing or treatment, leaving them with no hope.
The ME community finds it incomprehensible that despite the National Academy of Medicine’s declaration that ME is an organic condition, requiring biomedical treatment, despite all the med- ical evidence, NICE has appointed a predominantly biopsychosocial GDG.


We need to know that the BPS approach, specifically recommending GET,CBT and Graded Ac- tivity Management, will no longer be applied to our disease, but how can this GDG, possibly bring that about ?

There is absolutely NO possible compromise between those who advocate a fatigue based thera- py service and who are a majority on the GDG and those who are desperate for a full-blown bi- omedical pathway to be put in place instead.

There is no such thing as a “balanced” biopschosocial / biomedical approach to ME; that is a contradiction in terms.

We appreciate that not all members have yet been appointed to the GDG, however that does little to alter the perception, in the ME Community, that NICE seems biased towards a BPS approach.

We also appreciate that Expert Witnesses will be appointed, who may have biomedical expertise. However, it is not certain how much influence they will have, nor how this will not lead to con- flicting views and interpretations.
NICE has a unique opportunity to develop, at long last, a proper biomedical pathway, to issue a clear message that ME is not Chronic fatigue or MUS, but a WHO classified neurological dis- ease with multi-system dysfunction..


It appears, however, to already have squandered that opportunity.

Can you please confirm, in line with international medical consensus that the intention is to pro- duce a biomedical Guideline for people with ME?

If so, can you please outline how this will be possible under the current GDG? What reassur- ance can you give people with Severe ME that this Guideline is going to meet their urgent need for a comprehensive biomedical pathway ?

Yours sincerely,
Simon Lawrence “


NICE Guideline Review

Panel is Heavily stacked against BioPhysical


Drs Charles Shepherd (co-opted) and William Weir have been appointed to the

NICE ME/CFS Guideline Committee. Co-opted members attend meetings, take part in

discussions but have no voting rights.
NICE is also looking to fill three more positions on the committee, namely a community paediatric nurse, specialist nurse and dietician. The closing date is Friday 23 November, and information on how to apply is on the NICE website.



Invest in ME October/November 2018

After failing ME patients for so many years with their guidelines, and despite being taken to a judicial review (by patients), and despite the NICE guidelines director seeming to admit that the current guidelines were unfit for purpose, NICE were able to begin afresh and really concentrate on doing the right thing once the decision had been made to review the existing guidelines [

Yet with their insistence on retaining CBT and GET as recommendations for treatments for

ME in the current guidelines whilst new guidelines are developed, which potentially will do damage to patients’ health, then one is left to wonder how genuine NICE really have been.

The correspondence between Invest in ME Research and NICE director Professor Mark Baker

[2] should have sent alarm bells to all.

IiMER’s carefully crafted questions elicited responses from Director Baker which really

showed the compromised position that NICE continues to retain.

IiMER commented on the current NICE guidelines development –…

IiMER made comments to Professor Mark Baker in ... See More

Minutes of Meeting held in Residence 2, House of Lords, Tuesday 17 July 2018, 2.00 pm

From Stonebird July 26th, 2018

Stonebird Response to NICE Guideline draft Scope Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.

Hope for ME Fibro NI

Thanks to Sally for adding and highlighting this vital issue to the NICE stakeholder submission, a point we think is important to raise before the NICE guideline development group makes further decisions. For the rest of our submission, July 26th, 2018!2225&ithint=file%2cdocx&app=Word&authkey=!AGKwvtChH-rJlyw


NICE - Comments on behalf of GAME  July 26, 2018

1 - The condition that you describe is unrelated to the specific neuroimmune disease myalgic encephalomyelitis, classified in the ICD10 under G93.3, not R53. By international treaty, the ICD is mandatory. 
Fatigue and digestive problems do not define ME. The key symptoms of ME (we refer to the International Consensus Criteria of 2011) are fundamentally different from any set of CFS criteria, just like the key symptoms of cancer, Parkinson, Alzheimer, etc. In addition, as a disease diagnosis, ME is not limited to symptoms. Unlike CFS, ME has pathology, signs and biomarkers. It can be treated and prevented.

2 General  - What we need you to do is either: (A) to remove all instances of ‘chronic fatigue syndrome’, CFS and ‘myalgic encephalopathy’ and rewrite the text to make it about myalgic encephalomyelitis; or: (B) to remove all instances of ‘myalgic encephalomyelitis’, ‘ME’ and ‘myalgic encephalopathy’ and rewrite the text to make it about chronic fatigue syndrome (in which case we cease to be a stakeholder). 
The wrong use of terms leads to false conclusions and recommendations and does incredible harm. After you’ve made your choice, submit the rewritten text for comments. We suggest using two rounds. Make sure to keep only actual stakeholders. Anyone maintaining that ME and CFS are the same is not a stakeholder for either target group and should be excluded. Use only ME evidence for ME guidance, and only CFS evidence for CFS guidance.

3 - A disease entity named ‘ME/CFS’ doesn’t exist.

4 - A disease entity named ‘myalgic encephalopathy’ doesn’t exist. If it did, by standard medical nomenclature it would exclude myalgic encephalomyelitis.

5 - Except for a couple of derogatory terms, there are zero synonyms to CFS.
The main synonyms to ME are: atypical poliomyelitis, epidemic neuromyasthenia. Some additional terms denote single outbreaks of ME. SEID is not a synonym to either, but a newly proposed syndrome diagnosis (see IOM). 

6 - CFS is not a clinical diagnosis but a research diagnosis (see Holmes; Fukuda; Oxford; IOM). 

7 General  - CFS is not a disease, one can satisfy CFS criteria but one cannot ‘have CFS’.

8 General - All proper guidance addressing diagnosis, treatment, management, and prevention of ME will lead to significant cost saving, given the high economic and social costs of the current practice of not providing ME patients and carers with any help or support. Improper guidance, including continued use of the wrong terminology, leads to high economic and social costs. 

9 General - Cost saving should however not be the only and primary purpose of providing guidance. First of all, we are here to save lives.

Guido den Broeder (Chair)
July 26 2018

Excellent critique of the NICE process to date from VIRAS. Do please read and disseminate. 

"The main problem we have is that NICE do not appear to have decided what disease the scope is for. The exact same mistake resulted in the failures of the 2007 attempt at a guideline. This decision must be made before any more work is undertaken and we expect to be informed. VIRAS never intended to be associated with a guideline for 'fatigue' and if NICE proceed on that basis we will oppose it.

Multiple sclerosis patients are not expected to tolerate guidance which incorporates patients who only have fatigue. Neither are lupus, myasthenia gravis, Sjogren's and Parkinson's patients. Patients with M.E. or CFS should not be expected to tolerate it either, and if NICE intend that they should - then that will be discrimination which VIRAS will challenge by every available means."

Lay member: ME/CFS

We are looking for lay members to join the ME/ CFS guideline committee.

Closing date: 5pm, Thursday 26 July 2018. 


Time commitment:  2 years. 


We are looking for: 

People who have an understanding of ME/CFS and the issues important to people with ME/CFS. This understanding could have been gained:

  • through personal experience of treatment and care provided for you by the NHS or social care services

  • as a parent or carer of someone with ME/CFS

  • as a volunteer or employee of a relevant voluntary organisation or support group.

Applications are especially welcome from people with ME/CFS (age 16+) from across the range of illness severities, and from parents/carers of people with ME/CFS. 

Any questions?  Contact the Public Involvement Programme at



June 2018

Accountability and Action


NICE (the National Institute for Health and Care Excellence) is now recruiting for lay members to join its               ME/CFS guideline committee.

Applicants will need to have an understanding of ME/CFS through personal experience, as a parent or carer, or as a volunteer or employee of a relevant organisation. The closing date for applications is Thursday 26th July 2018.

For more information about the role and to download an application form, please see the full details on the NICE website:


Dear all,


We are now recruiting for the Myalgic encephalomyelitis/chronic fatigue syndrome guideline committee. All information including how to apply for the role can be found at the link below:

Please note that the closing date for this advert is 5pm Thursday 19th July.

Amy Kelsey | Senior Project Manager

National Guideline Centre | Care Quality Improvement Department | Royal College of Physicians

11 St Andrews Place | Regent’s Park | London NW1 4LE


Mobile +44 (0)7557199906 | | facebook | twitter | linkedin


NGC is a governance partnership between the Royal Colleges of General Practitioners, Nursing, Physicians and Surgeons.​

May 2018 - Reviewing Guidelines Stake Holders meeting.

NICE guideline: Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (Oct 2020)
Guideline scoping workshop on Friday 25 May 2018 at 10:00 – 13:00 with refreshments available from 09.30  to be held at Avonmouth House, 6 Avonmouth Street, London, SE1 6NX


IiMER have made this brief response to NICE.
Due to the reasons mentioned in the letter we are not able to attend in person.
IiMER are preparing for ME Conference Week in London next week with the top researchers from the major centres of ME research from all over the world.

Dr Peter Barry, a paediatrician from Leicester.
His main specialisms seem to be intensive care, and inhalation meds (asthma mainly)

ME Association

Last Thursday, May 24th, the ME Association as stakeholders in the ME/CFS clinical guideline review received a draft scoping report from NICE.  The draft scoping report sets out the parameters by which NICE will create the content for the new guideline for ME/CFS and it will be discussed at the scoping workshop for stakeholders this coming Friday.

There will then be a short period of consultation, whereby stakeholders can feed back any comments or concerns about the draft scope, before the appointed guideline development group get to work on the main content.  NICE is holding its scoping meeting today so hopefully we have several members there including @Jonathan Edwards and @MEMarge representing this group. The ME Association has helpfully published the timetable for the new guideline.Looking forward to hearing what went on.

NICE with Jonathan Edwards, May 2018.  (Phoenix Rising)
     We are all going to be suspicious, that the same psychiatrists and their therapists will continue managing people much in the same vein for the foreseeable future. However, I see no possibility of changing that without giving NICE the motivation to axe all ME services as non-cost-effective and provide nothing. These people have to be there, not just as stakeholders but as the people who are at present the justification for continuing to have any service at all. There were also infectious disease/immunology specialists present but I am not sure just how different their approaches are. What I think can be achieved is a shift in their mind set that at least leads them to question justifying what they do on the grounds of a CBT/GET centred model, or for the immunologists feel relieved that they do not have to pretend to be psychiatrists.
     The whole process is going to have to be slow and move by stages and my thought was that we have managed to complete one stage. The people at NICE in charge of the guideline committee are not only fully aware of all the critique of CBT/GET but recognize its legitimacy. 

Quotes found online from various stakeholders present.

Invest in ME pointed out that the Lightning Process is mentioned in the scoping document.
It is, but NICE clarified that doesn't mean they'll be recommended--just that they'll be included in the evidence.

Jonathan also pointed out that narrative summaries of studies aren't suitable in this case, and they seemed to agree. They also agreed that the criticisms and discussions around certain studies also needed to be considered. Charles Shepherd said patient experiences should get a higher priority due to the poor evidence base, which was also well received.


There is a conspicuous disconnect between what the clinics describe and what patients say is happening in the worst cases. Perhaps they really do intend to tailor treatments for everyone, and be supportive, but over the years have started rushing things and getting defensive at patient pushback, and so more and more patients get given a cynical, prescriptive treatment as a result.

It's like there are two worlds. One the clinicians inhabit, and another patients inhabit. They seem completely different.

One of the women at our table sent her daughter to Crawley. She said Crawley started off quite good, but her paranoia and naivety got the best of her, and so now she's quite defensive and feels aggrieved that she isn't getting rewarded and celebrated for her work. As a result, her treatments have got worse too.

The psychiatrist on our table was from the Liverpool clinic. So hearing his account and comparing it to patient accounts was quite enlightening. I think there's an element of wilful ignorance going on, but they do seem relatively sympathetic to patients. The trouble is, they may not be saying what they truly believe, because they're experienced in avoiding that conflict.

It's like when I get in a taxi with a driver going on about politics, and it quickly becomes apparent he's racist and right-wing. I know instantly not to mention that my mum is a black Labour councillor. I don't mention that I'm a rabid socialist. I don't mention that I believe in a universal basic income as a solution to widespread inequality. I just nod and pray that there's no traffic. Otherwise I would have to have yet another argument about race or politics or both, and neither of us is going to change our opinion. This could be like that.

Jonathan Edwards NICE
“I would be interested to know what the evidence base for therapist-delivered treatments for MUS is - if there is any. My impression has been that PACE and the GET meta-analysis for ME have been taken as the bedrock evidence from which to extrapolate. If we can get to the point where it is agreed by NICE that this evidence is not there then the MUS programme will be out in the cold in terms of its own guidelines. There are other political forces at work in the NHS, like IAPT, but much of the programme is driven by academic doctors wanting to build psychosomatic empires through pseudo research. If it becomes clear how pseudo this is for ME maybe it will dent the bigger program.”

Up until about 4 weeks ago I was exactly where you are in terms of adapting the clinics ....however after listening to various other perspectives I’ve moved my position. I think these would be abused (particularly in the case of children) so I’ve gone off the idea. I think all of the positive points you have raised are exactly what I would like to see...I just think the old guard needs to be fully swept away before we have any chance of rebuilding to something better.
I was there before and now think it is a big risk that GPs won’t want /be able to do more everyone                                                                                       will be pushed to IAPT and diagnosed with FND                                                   

Nice Guideline April 2018 review NICE announces next steps in updating its guideline on ME/CFS

   A workshop last month with stakeholders marked the formal start of NICE’s collaborative work to update its 2010 guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).   The workshop was held so that stakeholders, including patient groups for people with ME/CFS and their carers, could help NICE identify at an early stage the issues they consider most important for the development of the new guideline.

   Over 45 people attended the workshop, representing 37 different organisations supporting people with ME/CFS.  

   NICE has also confirmed the next steps in the development of the new guideline, starting with a further workshop with stakeholder organisations on 25 May to discuss the scope of the guideline. Stakeholders will then have the opportunity to comment on the draft scope between 21 June and 19 July. This will coincide with recruitment to the independent guideline committee, which will also begin on 21 June with adverts posted on the NICE website.

   Professor Mark Baker, director of the NICE centre for guidelines, said: “We wanted to get the views and insights of as many people as possible who are affected, either directly or indirectly, by ME/CFS to make sure we understand the issues that are important to them.

   “The clear message from the workshop was the need to ensure the new guideline properly addresses and resolves the continuing debate about the best approach to treating people with this condition. It also confirmed our intention to ensure robust representation of people with ME/CFS, or their carers, on the independent committee that will develop the guideline.

   “Therefore, following the scoping workshop we’re holding in May, we will recruit a guideline committee which will include 4 people with the condition or their carers, rather than the usual 2. Additionally, we will include a lay member on the recruitment panel for the chair of the guideline committee.”

Once recruited, the committee will review a wide range of evidence and develop recommendations, based on the agreed scope of the guideline.

   ME/CFS is a relatively common condition affecting around 190,000 people in the UK. It comprises a range of symptoms that includes fatigue, headaches, sleep disturbances, difficulty concentrating and muscle pain.

   It can cause prolonged illness and disability and although some people have relatively mild symptoms and can still manage daily activities with additional rest, others have a more serious form of the illness that severely affects their everyday lives and can leave them housebound. The pattern of a person’s symptoms, and their severity, can vary from day to day, or even in the same day.     Further details about the development of the new NICE ME/CFS guideline, including the timeline

April 2018  Forward-ME

A group that includes many UK ME/CFS charities and that is lead by the Countess of Mar, has written to the Science Media Centre, calling on them “to retract and replace your factsheet on CFS/ME, published on 21 March 2018”.
Read the full letter at:
"It is concerning that a reputable resource like the Science Media Centre would publish such a grossly inaccurate claim, one that can be so readily overturned. Those who disagree with the evidence for CBT and GET cite the extensive investigations of the US governmental health authorities.   The reality is that at this time there are no US governmental health authorities who agree that the PACE trial is “good quality”. It is absurd for any “Factsheet” on ME/CFS to overlook this fact.
If you re not prepared to retract this factsheet I regret that we have no option but to report our concerns to the Charity Commission."   

​​March 19, 2018  Greg Crowhurst. LETTER TO NICE RE : TIMING OF ME SCOPING MEETING

Dear Sir Andrew Dillon,
   I am writing to express my concern about the timing of the Myalgic Encephalomyelitis Scoping meeting; scheduled between 10am and 1pm on 25th May 2018, which makes my attendance almost impossible, as a full time carer for someone with Very Severe ME. I am greatly concerned that people with Myalgic Encephalomyelitis or their Carers may find an early morning extremely difficult to get to without great hardship and impact upon their health.

   It is shocking that any NICE event that seeks to include people with a chronic illness and disability, let alone one as profoundly disabling as ME, would schedule an early morning slot. Anyone with a disabling disease would have difficulty attending this meeting, but for people with ME that difficulty is magnified many times over.

   If NICE wishes to demonstrate its willingness to better engage with the ME community over the current inappropriate guidelines, then an early morning meeting in central London, shows no awareness whatsoever of the complexity of the illness, the unpredictable timing of care needs or how massively disabling the disease is.

   The timing is absolutely flabbergasting, it will not, I fear, enable the most ill, in particular, to have a voice, yet their needs must be heard and acknowledged by NICE.

   I am writing to ask if you will change the time of the meeting to better reflect and accommodate the needs of the people you are inviting, particularly those who need to travel from outside the Capital and are reliant upon public transport.
   Where I live, for example, in a remote place, public transport is at least 27 miles away. It takes a minimum of 50 minutes even to drive to the Railway station. The journey to London is several hours and for a 10am start, I would realistically have to get up about 4am in order to prepare for the day and get there. To stay overnight means greatly increasing the risks involved.

   I would greatly appreciate a prompt response and a willingness to change the time.

Forward ME  Minutes of the meeting held in Residence 1  House of Lords

Wednesday 7 February 2018 starting 2pm

*ME is not a mental health condition, but children are often referred inappropriately to CAMHS. Having to attend school can be a key cause of relapse in children with ME which has a devastating effect on the children and the families.

*ME is the biggest cause of long term sick absence from school. A significant number of children and young people experience co-morbid anxiety and distress from coping with the stigma of ME and educational pressures.

ME Community Research January 2018

Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT *
Carolyn Wilshire a, Tom Kindlon b, Robert Courtney, Alem Matthees, David Tuller c, Keith Geraghty d and Bruce Levine
BACKGROUND: The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome. Reports concluded that both treatments were moderately effective, each leading to recovery in over a fifth of patients. However, the reported analyses did not consistently follow the procedures set out in the published protocol, and it is unclear whether the conclusions are fully justified by the evidence.

 Carol Monaghan (Glasgow North West) (SNP)      

PACE Trial: People with ME  20 February 2018 Volume 636

I beg to move, that this House has considered the PACE trial and its effect on people with ME.  

Myalgic encephalomyelitis, or ME, has been described in many ways, but labels such as chronic fatigue syndrome or post-viral fatigue syndrome simply do not come close to the living hell experienced by many ME sufferers—a hell that is made worse by the lack of understanding that is faced when seeking help.

ME is estimated to affect about 250,000 people in the UK and is classified by the World Health Organisation as a disease of the central nervous system. Symptoms can include debilitating muscle pain, severe headaches that are often made worse by light or noise, significant impairment of short-term memory and post-exertion malaise that can last days and even weeks.

Feb 18th, 2018 Scottish Good Practice Statement on ME-CFS

This is similar to NICE Guidelines. Maybe slightly better, but still crap.  It has been converted to Word.doc

It can be downloaded and used as a template to create outline for better Guidelines.!Z9MGBJTY 

Decryption key !ob80fTZsjqhq_C7Miy1_aLycRj_OGcx4JKyFshbA7YE

Paste this into download link - Check out


Stakeholders meeting January 16th, 2018  

Impressions from the meeting by Sally Burch


The meeting started with some explanations of the process of review. It was explained that, in a break from the traditional process, this engagement meeting was being held before any scoping document was produced. There were 60 or so people in attendance and overall the meeting had a positive feel to it.

We were welcomed to the meeting by Philip Alderson, the Clinical Advisor for NICE.  Then Mark Baker, the Centre for Guidelines Director at NICE, explained about the guideline update.  One thing he said struck me as very important.  He said, "We are going to tear it up and start again. We won't allow it to look the same." I found this reassuring.  Indeed, he reiterated several times that the guideline was to be replaced in full. He also said that a re-naming of the guideline would be possible.

Norma O’Flynn, the Chief Operating Officer for the National Guideline Centre, explained how NICE contract with the Royal College of Physicians to develop guidance. She said that there were a staff of fifty plus, and that they provided the technical expertise to support the guideline committee, and to manage the development of guidelines according to NICE processes.

Norma O’Flynn gave a time line for the development of the new guideline. This included a "Scope Stakeholder Workshop" on the 25th May, and a Scope consultation between 21st June and 19th July.  An advertisement for the guideline committee members will also run over the same period. The first guideline committee meetings should happen from November 2018, and as most guidelines take about 70 weeks to be developed, this should mean the guideline consultation taking place about April 2020.


Victoria Thomas, the Head of the Public Involvement Programme for NICE, told us that in this update they would be “starting with the perspective of the patient”.  She explained that there would be four patient members on the guideline development committee, and that individual patients (or carers) could apply as themselves, ie they do not need to be attached to a stakeholder group to be on the committee.


After a few questions from the floor, the different tables had time to feed back to NICE representatives.  Some pre-determined questions on the guideline were posed, and we were encouraged to look forwards rather than backwards. However, in our discussions some of the problems with the old guideline needed to be raised in order to highlight how a new guideline could be made better.

The table I was at managed to cover many important issues, and I think it is fair to say that the patient voice was most definitely being heard.  I brought with me two documents.  The first was a document I wrote listing issues I thought important for the meeting.  Most of these points were in fact raised by others at the table, meaning that I didn’t need to make each point myself.  The second document was a print out of Linda Crowhurst’s Facebook post entitled “An Honest Appraisal”.  I left both documents with the facilitator at our table, and also handed a copy of each document to Mark Baker after the meeting.


I left the meeting exhausted, but cautiously optimistic about how this development process might work.  Perhaps advocates more seasoned than I, will say that I am being naïve.  Perhaps I am being naïve, but I can’t deny it: this meeting went considerably better than I was expecting.  I guess the proof of the pudding will be in the eating, but for now I am pleased that I could say the things I wanted to say, and that my voice was heard.


Onwards and upwards? I hope so. 


Points to consider from Sally Burch Patient Representative for Hope 4 ME & Fibro NI


1. Remove all reference to “fatigue” from the name of Myalgic Encephalomyelitis. The current prefix of “chronic fatigue syndrome” gives a misleading impression about the aetiology of the disease, and further encourages GPs to use the “CFS/ME” diagnosis for idiopathic fatigue. The disease of ME should not be inadvertently conflated with lifestyle fatigue, nor fatigue originating from other undiagnosed issues.


2. Remove CBT & GET from the CG53 guideline. This should be with immediate effect and with substantial publicity. Reason: CBT & GET no longer have a supporting evidence base for long-term efficacy, and there is now considerable evidence indicating harm from their implementation. Further these therapies are based on an outdated psycho-social premise for ME that is without evidence to support it.


3. Advice given to the patient should be honest and transparent. Patients would prefer to know that their condition is potentially life-long, debilitating, and requiring major life-style change. By avoiding an early suggestion of ME as a diagnosis, patients are left vulnerable to doing serious harm to their long-term condition by their own natural attempts to continue with their current lifestyles. For some this lack of advice means plunging into irreversible and severe ME.


4. Patient Protection from HARM must be paramount:  Appropriate advice to protect the patient from iatrogenic harm should be included in the guideline. This is especially important for the most severely affected. I suggest:


  • Advising GPs to facilitate requested home visits for moderate and severe ME patients. GPs should be aware that they may not observe their patients’ problems first hand, due to the delayed nature of symptom exacerbation in ME. Appearing “okay”, on a previous visit does not mean that the visit was without harmful after-effects.


  • Advising Social Services that manifestations of ME could be mistakenly regarded as a safe-guarding issue. Eg Patient may be seen in a darkened, sound-proofed room, with carers who may appear over-protective. This is to be expected when ME is severe.


  • Advising GPs to list the potential manifestations of ME in their letters to schools, social services and employers. This should include advice on the potentially long-term nature of ME, with specific advice to avoid any prescriptive “phased return” to normal activities.


  • Advising hospital staff, including A&E departments, on the need to accommodate ME patients as they seek to avoid sensory over-stimulation by normal hospital activities. Requests to be placed in a quiet area with low lighting should be honoured with minimum fuss.


  • Advising all professionals to consult with severe patients (or their spokespersons) on each patient’s specific needs and considerations, prior to any non-urgent interaction. This due to the potential for simple, normally insignificant, events to cause real harm to the patient. Risk assessments.


  • Advising all health professionals to carefully weigh the need for additional medical investigation or procedures with: i) the need to detect or treat a comorbid condition, ii) the potential harm caused by the procedure to the patient’s ME severity and iii) the patient’s views. However, no medical investigation should be ruled out simply because of an existing diagnosis of ME.


  • Advising GPs that “Rest and Recuperation” is appropriate advice for patients suspected of having ME. Assuming no properly evidence-based treatments are yet available, the advice to rest as much as is required to alleviate symptoms, should be given. Ideally, this should be accompanied by practical advice on how to reduce energy expenditure, and should be suggested as a precautionary measure even prior to formal diagnosis.


  • Management advice on the use of Heart Rate monitors should be expanded to include warnings. GPs often don’t recognise that ME patients’ heart rates respond inappropriately to exertion. The current exercise advice of 50-70% of maxHR requires normal individuals to take a brisk walk or gentle jog, yet an ME patient might hit this range by simply sitting up in bed. Unfortunately, a busy GP may not recognise how differently ME patients are affected by exertion, and so suggest a “brisk walk” for his/her patient. The aim of any heartrate monitoring strategy for ME patients should be to keep heart rate low.


5.The make-up of the Guideline Development Committee is going to be critical to the nature of the ultimate new guideline. Patients need assurance that the selection of this committee is free from bias. I am of the view that:


  • Psychiatry should play no part in creating the primary guideline for ME. ME has a physiological aetiology. The issue of counselling for secondary mental health issues should not require a psychiatrist to sit on the development group.


  • Those who benefit financially, or reputationally, from the continuance of the current CBT/GET treatment paradigm should have no place on the development group.


  • Patients and carers who have direct experience of Severe ME should be consulted on the care advice offered for patients with the extreme sensitivities of Severe ME.


  • An individual with clear understanding of statistics and research methodology should be included in the group. This is to ensure that an appropriately critical approach can be utilised on the papers to be considered as evidence. This individual should also consider any published criticisms of existing peer-reviewed papers.


  • Those who produced the existing guideline should be excluded from the new development group, in order to ensure that a new approach can be properly considered.


6.When the new guideline is issued, there should be extensive publicity through out the medical world highlighting the change of approach. This should include an insistence that the discredited psychosocial approaches to ME are abandoned by all health care practitioners. References to the psychosocial approaches of CBT and GET should also be removed from all health service literature and webpages.


ME Association, UK

Reviewing the NICE guideline for ME/CFS: by Dr Charles Shepherd, Jan 17th, 2018


     The purpose of this workshop meeting was to (a) allow NICE to explain how the new guideline on ME/CFS would be prepared and (b) hear from stakeholders what they wanted the new guideline to deal with – as well as what they did not want it to deal with.

     There were around 60 stakeholders present – consisting of representatives from most of the ME/CFS charities and some of the local NHS clinics, patients, carers and parents of children with ME/CFS, and several doctors and other health professionals.

     Among the doctor’s present were Dr Abhijit Chaudhuri, Professor Jonathan Edwards, Dr Luis Nacul (from the ME Biobank); Dr Paul Worthley (ME Trust), Professor Michael Sharpe and Dr William Weir.

The Countess of Mar was also present to represent the Forward ME group of charities.

Reviewing the NICE guideline for ME/CFS: The Stakeholders Engagement Workshop – A Report by Dr Charles Shepherd | 17 January 2018

     Dr Charles Shepherd summarises the key points to emerge from the NICE Stakeholders Engagement Workshop that took place on Tuesday 16th January 2018.



     Following the very welcome news from NICE at the end of last year that they had decided to produce a completely new guideline on ME/CFS, stakeholders in the current guideline were invited to a meeting in London yesterday.

The purpose of this workshop meeting was to (a) allow NICE to explain how the new guideline on ME/CFS would be prepared and (b) hear from stakeholders what they wanted the new guideline to deal with – as well as what they did not want it to deal with.

     There were around 60 stakeholders present – consisting of representatives from most of the ME/CFS charities and some of the local NHS clinics, patients, carers and parents of children with ME/CFS, and several doctors and other health professionals.

     Among the doctor’s present were Dr Abhijit Chaudhuri, Professor Jonathan Edwards, Dr Luis Nacul (from the ME Biobank); Dr Paul Worthley (ME Trust), Professor Michael Sharpe and Dr William Weir.

The Countess of Mar was also present to represent the Forward ME group of charities.

NICE presentations


Stakeholders were placed into small groups on a table and the meeting was split into two sections. The first section involved a series of short presentations from senior people at NICE who are going to be playing a key role in the development of this guideline.


Dr Philip Alderson, Clinical Adviser at NICE, welcomed everyone.

Professor Mark Baker, Centre for Guidelines Director, spoke about how NICE had now accepted that the current guideline was no longer meeting the needs of people with ME/CFS and that they needed to prepare a completely new guideline.


Dr Nora O’Flynn, Chief Operating Officer at the National Guideline Centre, explained how the work on this guideline would be based at the Royal College of Physicians and the way in which it would be prepared. This presentation contained some important practical information on the timeline::

  • Scope Stakeholder Workshop on May 25th

  • Scope consultation from 21st June to 19th July

  • Advertising for guideline committee members from 21st June to 19th July

  • First guideline committee meetings will start at the end of November 2018

  • Guideline development process will take about 70 weeks

The development process will involve:

  • Discussion and preparation of the Scope of the guideline – i.e. what it is going to cover and not cover

  • Dealing with important clinical questions

  • Reviewing of the protocols

  • Obtaining evidence reports covering clinical and economic evidence. The systematic review of published evidence will be carried out internally at NICE this time

And on the membership of the guideline committee:

  • This will be multidisciplinary as far as health professionals are concerned with 10 to 12 members

  • Up to 4 lay members – patients and carers who will be expected to make a significant input


The position of Chair of the Guideline Committee is currently being advertised and interviews will take place in February.


Victoria Thomas, Head of the Public Involvement Programme at NICE, spoke about the role of patient participation in the development of NICE guidelines and outlined how patients and patient representatives could get involved in due course through the Public Involvement Programme.



The main part of the meeting was then devoted to round the table discussions on what people wanted to see in the new guideline – with a member of NICE staff facilitating, asking questions and recording comments.

The discussion on our table, which included Dr Luis Nacul and Dr William Weir, covered a very wide range of topics:

  • Nomenclature (ME, CFS, SEID etc) and the various clinical and research diagnostic criteria currently in use (e.g. Oxford, IOM, Canadian) – including what should this guideline be called in relation to ME and CFS nomenclature

  • Clear guidance on the importance of an early and accurate diagnosis in primary care

  • The role of investigations – baseline and the use of additional investigations (excluding Lyme disease for example) where appropriate

  • The importance of appropriate personalised management, especially in relation to rest and pacing, during the very early stages of an ME/CFS like illness

  • Activity management:  Pacing, harmful effects of GET, exercise physiology testing (VanNess et al)

  • The importance of collecting and making use of clinician and patient evidence – as occurred in the CMO Working Group Report

  • Problems faced by children and adolescents with ME/CFS – including lack of NHS referral services, education issues and inappropriate child care proceedings

  • Severe ME/CFS – including how to define mild, moderate and severe ME/CFS and the use of disability rating scales and functional impairment assessments

  • Overlapping conditions e.g. hypermobility syndromes; IBS; migraine type headaches


Overall, this meeting represents a very encouraging and constructive start to work on the new NICE guideline. And as I know from several previous meetings with Professor Baker, he is genuinely interested and concerned about the criticisms of the current guideline that have been made by the patient community and wants to make sure that the new guideline is fit for purpose and acceptable to the patient community.

Unfortunately, starting from scratch means that the new guideline will not be published till October 2020. In the meantime, it looks as though the recommendations in the current guideline will remain – but this is another matter for discussion with NICE.


Dr Charles Shepherd, Hon. Medical Adviser to the ME Association.




​Greg Crowhurst’s response to ME Association review of yesterday’s PACE meeting

‘This Report smacks of compromise and a lack of awareness of the key issues.
     With its use of the term ‘ME/CFS’, with no mention of separating them, with no mention of the ICC, with no mention of the dangers of CBT, just GET, it is a disturbingly compromised position to start with.
     Anyone using the term “ME/CFS “when discussing a brand new major Guideline, with the opportunity for real change, supposedly on the table, is missing a real opportunity to let go of the CFS name, so despised by patients - and all the dreadful baggage that goes along with it.
     The ommisions raise concerns for us, that the lack of radical content, right at the beginning, will lead to a mediocre service, still including psychiatry, potentially.  The document raises worrying alarm bells for us.  We need ME to be separated from CFS and front line psychiatric involvement in ME to end.  The starting point is so important to get right. If you start with a compromise, that is where you are going to end up.

The patient community do not want the term “fatigue” applied to their disease.   it is about time patient experience, need ,concern and experience was the starting point. We are not convinced Clinicians necessarily understand the patient view or experience.  if the Medical Advisors and Charities don’t fully understand these issues by now, we will end up with the same regime of fatigue clinics and Activity Management, the same underlying attitudes , the same compromise, so really what hope is there for us?

My wife says she does not want to be sold down the river again.  That is what this document has left us feeling, in stark contrast to the uplifting presentation by Sally K Burch.’.


Invest in ME response to the Jan 16th, Stakeholders meeting for NICE

January 17, 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 organizations 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


ME Research UK Jan 2018 Stakeholders Meeting with NICE


On 20th September 2017, NICE announced that following a stakeholder consultation on its plan not to update the 2007 guideline ‘Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy: diagnosis and management’ (CG53), “broader issues with the guideline were highlighted that called into question the guideline scope and its current relevance. After further consideration of information from stakeholders including new evidence (see appendix B: summary of evidence highlighted to NICE during consultation, and appendix C: stakeholder consultation comments table) alongside the evidence identified through the surveillance review, NICE has decided to fully update the guideline with a modified scope.”

As part of the process to replace the guideline by October 2020, NICE held a Stakeholder Engagement Workshop in London on 16th January. Having submitted comments as a stakeholder to NICE as part of the Consultation, ME Research UK was represented at the workshop by Vice Chair, Mrs Sue Waddle. Commenting on the Workshop, Sue gives her views on the meeting and information about the stages of the review.

“This meeting was extremely encouraging. Professor Mark Baker (Director of the Centre for Guideline at NICE) is determined to ‘do the right thing’ – and he does listen. So, I am hopeful that the outcome will be more favourable in the upcoming guideline than the present version. I also think that I have got through to him over the last year on the principle of “First, do no harm” in regard to Graded Exercise Therapy [GET] and that they may take the unusual step of issuing an Interim Advisory Note before the next version of the guideline is published.

The National Guideline Centre has contracted the Royal College of Physicians to develop ‘Guidance’ since 2016, following a smaller activity started in 2009. It has a staff of about 50 people to support a Guideline Committee that has approximately 16 ‘slots’ per year. The Development Process covers: Defining the Scope; Address Clinical Questions;


Reviewing Protocols; Generating Reports to cover Clinical and Economic Evidence; and, Generating Recommendations.


The Guideline Committee usually consists of members (not representatives) of :

  • 10-12 Healthcare professionals providing multi-disciplinary inputs from topic area specialists and generalists; and

  • 2 Lay Members representing Patients and Carers.


However, for the ME Guideline Committee will be extended to permit up to 4 Lay Members. The timeline for the ME


Guideline Committee has been established by NICE as follows:


  • Scope Stakeholder Workshop  May 25th, 2018:  

  • Scope Consultation June 21st to July 19th, 2018

  • Advert for Committee Members June 21st to July 19th 2018

  • First Guideline Committee Meetings from end of November 2018

  • Guideline Development Process nominally 70 weeks

  • Guideline Consultation Process expected to start April 2020

The Core Principles for developing all NICE Guidance cover:

  • the establishment of Independent Advisory Committees;

  • the establishment of a Comprehensive Evidence Base; and all

  • receive Expert Input;

  • have Public Involvement;

  • include Genuine Consultation;

  • are subject to Regular Review;

  • operate under an open and transparent process; and,

  • consider Social Values and Equity. states that “The expertise, insight and input of Lay Members is essential to the development of all NICE guidance and advice, and helps NICE to make sure that our work reflects the needs and priorities of those who will be affected by them.”

The NICE programme encourages appropriate organisations to register as Stakeholders; facilitates recruitment of patient, carer and service user members to NICE committees; provides on-going support and training to individuals and organisations; and, supports individuals and organisations in getting NICE guidance into practice.

From mid-2018 the NICE web site will go live to support for ME Guidance Committee.”

More discussion on this meeting can be found here.