Minutes of the Meeting held in Residence 2

House of Lords

Tuesday 31 October 2017, 1.30 pm


Countess of Mar (Chairman)

Janice Kent (reMEmber)

Bill Kent (reMEmber)

Christine Harrison (BRAME)

Hannah Clifton (ME Trust)

Gareth Tuckwell (ME Trust)

Jane Colby (TYMES Trust)

Anita Williams (TYMES Trust)

Tony Crouch (representing 25% Group and TYMES Trust)

Clare Ogden (Action for ME)

Dr Charles Shepherd (ME Association)

Professor Malcolm Hooper

Dr Nigel Speight

Dr Paul Worthley (ME Trust)

Sue Waddle (ME Research UK)


Professor Mark Baker, Director of Guidelines, NICE

Mr P Boorman, Communications, NICE

Apologies: Tanya Harrison (BRAME)


1.Professor Mark Baker


1.1 Prof Baker gave a recap on the present Guideline on CFS/ME, saying that it had served some purpose but it had shortcomings which we had discussed at our meeting in 2014. It had therefore been agreed that the Guideline should be revised. He went on to say that when they consider guidelines for review they do so within the scope of the original guidelines. However, that did not mean that they had always got it right the first time, and, as he hoped he had made clear at our last meeting, he for one had never been comfortable with the Guideline on CFS/ME. To revise an existing NICE guideline was difficult but he had succeeded on two occasions, one being the Guideline on low back pain.


1.2 Professor Baker went on to say that out of 38 bodies who were consulted about the proposal for a review, 32 were in favour. 31 of those in favour were patient-representative bodies; the other was the Royal College of General Practitioners. As well as himself, the other senior Directors of NICE were persuaded of the need to change. He would be retiring within the next year but would pass on the work to his successors.


1.3 This meeting was one of a series they would be having with interested bodies as a prelude to work starting on the review of the Guideline. They had already met the Royal College of GPs, the Royal College of Physicians and the Royal College of Psychiatrists. There had been no opposition from these Colleges to updating the Guideline. The Royal College of Physicians will host the development of the Guideline.


1.4 Particular care would be taken with the make-up of the independent guideline committee and the scoping stages. Committees of this kind can have two or three patient/carer members and that would be particularly important with this committee. NICE were minded to include a lay person from the committee in the appointment of its Chair and they would probably look to Forward-ME to provide help with recruitment of lay people. Normally draft scoping is drawn up by technical experts; in this case they intended to hold a workshop first, probably in mid-January, and that would lead to the scoping exercise. The committee would probably meet for the first time in about September or October 2018 and publication would probably be some time in 2020


1.5 The content of the current Guideline had been decided by consensus and that would probably be the case with the revised Guideline, so it was essential to get the make-up of the committee right for the new guideline. Those formulating the Guideline would do so with an open mind and would be driven by evidence. NICE plans to give greater credence to patient views in the development of the guideline.


2. Questions and comments.


2.1 The Chairman thanked Prof Baker and asked what would be the status of the current Guideline whilst the new Guideline was being developed. Prof Baker explained that the existing Guideline would stay in place until it was replaced.


2.2 Dr Charles Shepherd commented that he and several others present had been involved in the CMO’s Working Group which had taken serious notice of the evidence of both patients and clinicians. What had emerged had been a pretty good document. The current NICE Guideline appeared to be based solely on published evidence and did not take account of patient and doctor evidence in the same way. Professor Baker explained that the way in which NICE gathered evidence had now fundamentally changed. They still gave due credence to published evidence but they also paid careful attention to clinician and patient anecdote. It was the quality of evidence from whatever source that was most important. In particular they needed to get the right diagnostic criteria. He admitted that the 2002 CMO’s report had got “rather swept away” by the NICE Guideline.


2.2 Returning to diagnostic criteria Prof Baker said he was considering the possibility of separate work-streams for ME and CFS (although he had not yet agreed that with his colleagues) because it was clear that not every patient’s illness followed the same pattern. The other issues he was keen to look at were mode of onset, previous medical history, prognosis and the likelihood of responding to treatment.


2.3 Janice Kent raised the question of the time lapse before patients are first seen. A doctor had told her that experienced clinicians could identify an illness in the first six weeks. Prof Baker agreed this was an important issue to be considered.


2.4 Christine Harrison said that following the experience and decision process of the previous NICE group it was imperative to get the scope right. Also getting the criteria right was so important. She was glad to hear that patient evidence was to be given an important rating.    Prof Baker said he had had a brief discussion with the chair of the original committee who had said special account needed to be taken of patients’ views. Professor Baker said that he had also been in communication with Tanya Harrison, who was the very severely affected patient representative on the original working group, which had been most helpful. NICE guideline and quality assurance processes are more robust and that should have a bearing on the decisions the committee takes and the final guidance.


2.5 Jane Colby said that a matter that had been of particular concern to TYMES Trust had been the distinction between “classic ME” and the “wider category of CFS”. She thanked Prof Baker for agreeing that this should be looked at. TYMES had also identified discrimination against children as a very important reason for this review. Children with ME were being denied their educational rights; if they were too unwell to attend school, home tuition or “virtual education” should be available. Prof Baker said Jane had made an entirely valid point which they had noted. He suggested she come to the workshop which would take place in about ten or eleven weeks; she could raise the subject then.


2.6 Prof Malcolm Hooper said he had concerns about the suggestion of separating ME and CFS. The two names were linked together by the World Health Organisation (WHO) in their classification, and WHO would not countenance classifying them separately. He would prefer to get rid of the name “Chronic Fatigue Syndrome” altogether. Otherwise they would be in danger of pursuing two different entities when there was only one entity.


2.7 Dr Nigel Speight said there had been enormous problems in the way people had interpreted guidelines. What was going wrong, at any rate on the paediatric front, was that doctors were not following the guidelines. It appeared to him that many doctors had a big psychological block towards the existence of ME. He had been dealing with a number of cases of children with ME where a diagnosis had been given of FII (or Munchausen’s Syndrome by Proxy). This should not have happened if the guidelines had been properly followed.


2.8 Clare Ogden asked for some more information on the make-up of the committee.

Prof Baker said they would normally want people from all the healthcare professions involved in the treatment of ME. The Chairman asked whether social workers and teachers should be included too. Prof Baker said they could be included. Referring to children he said the work-streams could be divided along age lines but no decisions had been taken on such things yet. They could flag up that the problems faced by children with ME are distinctive. They would recruit during the formal scoping phase which would be in about six months’ time. Lay members would be recruited too.


2.9 The Chairman asked whether stakeholders would be involved. Prof Baker said they normally are, and they would consider whether there should be some sort of reference group made up of professionals and lay people.


2.10 Returning to the names “ME” and “CFS”, Janice Kent said that whatever the illness was called, the basic symptoms were the same. Similarly whatever name was given the severity of the illness varied. Where was the scientific evidence that there were two different conditions? Members discussed terms like “post-exertional malaise” and “cognitive dysfunction” which, some thought, did not always convey an accurate picture.


2.11 Dr Charles Shepherd returned to the point made by Dr Speight about clinical judgement. He said that the current NICE Guideline did not recommend (or in some cases strongly prohibited) certain therapies. He gave an example of a physician who had prescribed something not recommended in NICE; the patient’s NHS provider would not supply that treatment because it was not recommended in the NICE Guideline. Many doctors were now reluctant to use their clinical judgement for this reason. Professor Baker agreed the Guideline was now obsolete on that point. It had been formulated on the basis of evidence available at the time, but new evidence had emerged since then.


2.12 Tony Crouch asked about the period between now and 2020. Was there any way of issuing a “health warning” or “word of caution” about the existing Guideline in the meantime?  People had big concerns about Graded Exercise, the treatment of children and the lack of help for the severely affected. They needed to know there was a question mark over the Guideline – that was the reason for the review. There was discussion about the problems surrounding Graded Exercise. Professor Baker said all these points would be looked at in the scoping.  


2.13 Sue Waddle said she would like to make two points. The first was about the name “Chronic Fatigue Syndrome” which had been coined in the 1990s – it made the disease sound trivial. Her second point was about the very severely affected like her daughter who had great difficulty getting medical, dental and optician help because of her inability to attend surgeries. The existing Guideline did not address this problem. Prof Baker said he understood that a section on the severely affected had been proposed for the original Guideline but it was dropped – apart from a section about referral to specialist services, which in half the country do not exist. It was most important to address the needs of the severely affected in the new guidance.


2.14 Referring to GET, Janice Kent said BACME claimed they did not insist upon it. She wondered who was inflicting it on patients. What about informed consent and the right of patients to refuse treatment? The Chairman pointed out that private insurance companies would often not pay out unless you had done a course of CBT or GET, and the DWP would threaten to withdraw benefits if patients did not accept such treatments when offered.


2.15 Referring to children with ME, Jane Colby said the illness could become more severe if children were treated in the wrong way – for example insisting that they attend school when they are too unwell. They are very frequently referred to CAMHS, although they haven’t a mental health condition. But it is the biggest cause of long term sickness absence from school, in both children and staff, as shown by Dowsett and Colby in the Journal of Chronic Fatigue Syndrome in 1997. That study also showed that children with a genuine mental health condition actually received better help with education than those diagnosed with ME/CFS, so it is a catch 22 situation.  Prof Baker said it was clear we would need to handle the publicity around this subject in careful phases. A different mind-set was needed, and the professions involved in ME/CFS care will need to be “drip fed” information throughout the guideline’s development.


2.16 Dr Nigel Speight returned to the point about severely ill patients. In the main they were housebound, but doctors and others seemed to have completely ignored the need for domiciliary visits. He had seen patients who had not seen their doctor for five years. The Chairman referred to other aspects of this problem such as the DWP requiring medical evidence about patients who never see their doctors, and repeat prescriptions being issued when the patients are never seen.


2.17 Prof Malcolm Hooper drew Prof Baker’s attention to his paper on ME. Prof Baker said he had received it. Prof Hooper said that the paper did not include a recent proposal to designate ME a somatic disorder. That needed to be stopped. Prof Baker commented that ME/CFS may need to be in a category of its own – not somatic or psychiatric.




2.18 Dr Nigel Speight related the story of a doctor who had been particularly offensive to a child in a wheelchair. Prof Baker said that sounded like a reportable offence.

Sue Waddle commented that sort of remark was not unusual. She added there had been a lot of evidence of Graded Exercise doing harm. Could that be monitored and dealt with now, rather than waiting until new guidance comes out in three years’ time?

The Chairman said she was about to table a Parliamentary Question on that very point. Jane Colby made the point that as you recover from your illness you are gradually able to do more. The problem with GET is the belief that making you do more actually makes you recover.


2.19 Dr Charles Shepherd asked whether there was anything further Forward-ME should be doing before the workshop in January. Professor Baker said we should think about how to persuade people of the need for change of mind-set. Senior members of his team would be attending as well as consultants/medical advisers, and they would start to involve the Royal College of Physicians at that point. There would be a senior member of the Royal College of General Practitioners (RCGP) and several analysts; these were the people who would have to be persuaded of the need for change. Charles Shepherd commented that Forward-ME had a very good meeting with the RCGP a few weeks before. They seemed to be sympathetic.


2.20 Prof Baker added that those registered as stakeholders would attend the workshop although they might have to put a ceiling on the number attending from the same organisation. They would be appointing the Chair early next year, and would like someone from Forward-ME to be on the panel that appoints the Chair.


2.21 Clare Ogden referred back to Prof Baker’s statement (1.1 above) about the NICE Guideline on chronic back pain which was revised and asked if any useful learning had come from this that could inform the revision of the guideline for ME. Prof Baker explained that the original Guideline was greatly criticised, which led to a vote of no confidence in the president of the British Pain Society. Basically it was not fit for the purpose and had not considered all the evidence sufficiently except for randomised controlled trials (RCTs). There was other contentious guidance, for example on asthma. He mentioned that the proceedings of NICE committees are nearly always confidential unless NICE decides otherwise, which they might in this case.


2.22 Dr Nigel Speight referred back to GPs’ knowledge of the illness. There was a tendency in these circumstances to go for regional centres of excellence. Some thought should be given to re-apportioning responsibility to GPs. Certainly the ability to make an initial diagnosis should be a core competency for all GPs and paediatricians, and they should be able to treat all except the very severely affected. He said that doctors have various ways of avoiding such responsibility, and that should be addressed. Prof Baker commented that they could, in the scope, ask some questions about responsibility for care. Given the frequency of the condition, over-centralisation was not desirable.


2.23. Taking up this point Dr Charles Shepherd pointed out that whenever we try to tackle Ministers about shortcomings in the services we are told that this is now the responsibility of the local Clinical Commissioning Groups rather than central government, but the local bodies were not providing what was needed. Janice Kent agreed, pointing out that few of them had a knowledgeable doctor, and those that are any good become over-subscribed. Jane Colby said that GPs were very important; they were in the local community and patients had more ready access to them, so they were best placed to diagnose and help families if they understand the illness.


2.24 In answer to a question Prof Baker confirmed that people can register as stakeholders at any time.  


2.25 Christine Harrison emphasised that children and the severely ill were the people in greatest need of new guidance and that must be taken into account. She added that even though the Guideline may be changed, unfortunately, it could take years for the mind-sets of clinicians and other professionals to change. Dr Speight suggested that one helpful step could be to just use the name “ME”, not “CFS” as well, and so dispel the idea that there are two separate conditions.


2.26 The Chairman thanked Professor Baker for his very helpful input at this meeting.


3. Other business


3.1 NICE Guideline review. The Chairman asked who should represent us on the panel that will decide who should chair the committee. After some discussion it was agreed Dr Charles Shepherd should be that person. Charles accepted.


3.2 Jane Colby handed out printed copies of the Tymes Trust’s Freedom of Information report on harassment of staff at Bristol University. In the report Bristol University was quoted as stating that there had been no reported harassment of its staff. There was general discussion about such allegations.


3.3 Dr Charles Shepherd referred to dubious therapeutic claims such as those made by proponents of the Lightning Process. He had referred such claims to the Advertising Standards Agency (ASA) who take them very seriously; they can order people to stop making these claims – and they do. He spoke of a recent complaint he had made which the ASA had said was so serious they were taking it to a higher body (“the Compliance Unit”) but could not tell him anything more. The Chairman asked Charles to send her details so that she could ask the appropriate questions.  


3.4 Returning to NICE, Dr Nigel Speight asked whether there was likely to be a separate group looking at the needs of children with ME. The Chairman said this was being looked into.



3.5 “Unrest”. The Chairman spoke of the excellence of that film which was shown at the Speaker’s Residence on 24 October. Those who had seen it agreed. There was discussion about the merits of several films and the problem of getting people to understand the suffering of the severely ill and their carers.


3.6 Parliamentary Inquiry on ESA and PIP. Dr Charles Shepherd said he had only just heard about this. Clare Ogden said Action for ME would be submitting a response after consulting with people with ME.


3.7 Independent Assessment Service (IAS) formerly ATOS.  Christine Harrison said BRAME had re-written guidance on ME for them and would be pressing Capita to accept similar. Sue Waddle commented that most of the problems with IAS (ATOS) could be avoided if the interviews were recorded. Christine said IAS haven’t a problem with that but the interviews must not be taped secretly.

She would get a formal statement on the IAS (ATOS) position and send it to the Minute Secretary (DN; Statement attached).


3.8 Next meeting; Tuesday 5 December 2017.  The speaker would be from CAMHS.


Statement on CIR & Function First Style Assessments by IAS for Forward ME 31 October minutes

Christine Harrison updated members on her work with the Independent Assessment Services (IAS formerly ATOS) and Capita in respect of PIP.

The Independent Assessment Services (IAS formerly ATOS) Conditions Insight Report on ME (and CFS) has recently been rewritten, with input from their stakeholder ME group (BRAME).  The CIR on ME acknowledges the neurological classification (WHO ICD10 G93.3) and provides accurate information on the conditions, and their impact on daily life, and includes reference documents, about ME and CFS. The CIRs are used by IAS Health Assessors to help HAs learn and understand more about a condition.

IAS have also changed their approach to the assessment, and are now universally following the Function First Approach, which was implemented after a successful pilot in February this year (2017). This ‘function first approach’ has been highly recommended and praised by Paul Grey in his report.

Christine informed the group that due to this function first approach proving to be more successful, Capita are now doing trials, which they will assess, and may also then take the same universal approach.

Capita has been saying that it will be revising their Conditions Insight Reports, including that on ME, for the past 18 months, and Christine will be raising this again at the next meeting with Capita, at the end of November, as this is something which needs to be urgently addressed.

Christine asked members of FME to please give her feedback, if they receive information about PIP health assessments, so that she can feed it back to IAS and Capita.  IAS have accurate information about neurological ME, so hopefully claimants will find that the IAS health assessors will have more knowledge, and better understanding of ME, and its impact on their daily life.


Following the PACE trial debacle, ME is now recognised as biomedical disease that is a COMPLEX CHRONIC MULTISYSTEM ILLNESS, CMI, that may be sporadic or occur as an epidemic. It is severely disabling WITH 25% of sufferers being housebound or bed bound – see UNREST and VOICES FROM THE SHADOWS.


Whilst other names have been proposed, Myalgic Encephalomyelitis – muscle pain with inflammation of the brain and spinal cord  - remains the best choice, so far. It provides a description that most clinicians should recognise and provides a basis for clinical examinations, requests for any further tests, and treatment.

ME is well established being first introduced by the WHO in 1969, see ICD 10 G93.3.

Inflammation is a universal feature of ME especially in the Cardiovascular and Nervous systems, Spence et al. 2008; Brooks 2015 Presentation at Research Colloquium Invest in ME; Donovan et al., 2009.

CFS (Chronic Fatigue Syndrome) should be abandoned. This name, abhorred by patients, was introduced in the USA in 1988 and is now recognised, by some of its proponents, as misleading and derogatory. It belittles the illness and those who suffer from it and has caused much distress/suffering, Komaroff quoted in Hooper 2007. Recently a petition has been raised to protest about the damage suffered by patients, MAIME (MEDICAL ABUSE IN ME) Myhill, 2017.

Regrettably, some clinicians and research workers now appear to regard CFS as a different disorder from ME. This is not the case. CFS is included in the alphabetical list of the WHO as synonymous with ME. This confusion must not be allowed to develop as it will vitiate the results of the PACE trial and maintain the present confusion about the status of ME as a biomedical disease.


The Canadian Consensus Criteria, CCC, 2003, and the subsequent International Concensus Criteria, ICC, 2011 developed by an international group of clinicians with long experience of patients with ME should be adopted and replace the Fukuda definition that also allows ME/CFS to be identified as a somatoform disorder. The CCC and ICC definitions are very comprehensive, covering all the major clinical systems and recognise PEM (post exertional malaise) as a cardinal feature of the illness.

The Oxford Definition, 1991, developed by psychiatrists from the 1970s, sees ME/CFS as a somatoform disorder. This misleading definition should be “retired” as recommended by NIH in the light of the PACE trial. ME is NOT a somatoform disorder.

Dr John Richardson and Dr Irving Spurr, two very experienced ME physicians, found some 25% of 3,000 referrals had emotional and mental health problems and not ME. Almost 1/3rd of had ME whilst another 1/3rd had various serious conditions together with their ME, e.g. thyroid disorders, including cancer, diabetes, lymphoma, Ehlers Danlos Syndrome, Spurr, The Way Forward, 2014. 

Numerous Mis- and Missed diagnoses have also been reported, Hyde, 2011. A number proved fatal.

Data from the Fatigue Clinics rolled out to deal with Chronic Fatigue also reported great variability in referrals showing that ME/CFS patients were a “rag bag’ of very varied putative diagnoses. See inter alia, Newton et al 2010.

The Oxford Definition identifies almost 10 times the number of ME/CFS sufferers as the Fukuda definition, Baraniuk, 2017.

The CCC and/or ICC should be adopted, as the basis for diagnosis and requests for further tests and targeted treatment, in the light of a thorough clinical examination/history.


ME commonly arises following exposure to a viral infection- the main culprits are enteroviruses, especially Coxsacchie B and Herpes viruses, especially Epstein Barr (Glanduar Fever). Other viruses have been reported e.g. parvovirus, Kerr, and adenovirus, Underhill, 2015. Other intra-cellular organisms, BCG, Borrelia (Lyme), Chlamydia, Rickettsia can give rise to ME-like symptoms.

The CCC and ICC provide detailed tests to facilitate a detailed diagnosis that will allow

a firm diagnosis.

Ehlers Danlos syndrome, EDS, is increasingly found in ME patients and needs to be excluded.

Serious cardiovascular damage is often very apparent and readily identified by modern imaging techniques PET, SPECT and MRI –especially in the brain, and electrophysiological techniques, QEEG, ECG.

Mitochondrial malfunction is a major feature of ME and is consistent with the multi-symptom nature of the illness, Myhill et al 2009, 2012, 2013. It is also a feature of other CMIs such a Gulf War Illness/Syndrome, Golomb 2014.


It is clear from the pace trial that GET/CBT is ineffective, if should be removed from any treatment protocols.  Exercise is known to be particularly damaging especially in the early stages of the illness.

Treatment will depend upon the diagnosis.

It is crucial that any drug treatment should be initiated within the FIRST 6 weeks of the illness. The demand that any fatigue must have continued for at least 6 months (now 3 months) has done untold harm and missed the window for effective drug treatment before some viruses becomes latent and elude the immune system’s defences.

This requires virus identification to be quickly available to GPs to substantiate a diagnosis. Other tests that are needed include the VP 1 test for enteroviruses. 

Herpes viruses can be effectively treated with antiviral drugs, eg valacyclovir, valgancyclovir. These pro-drugs are readily distributed in the body and are listed in the BNF. At present they are largely reserved for patients who have received organ transplants. They should be made routinely available to treat ME patients when their ME has resulted from EBV or other herpes virus infection. Good protocols are in the literature – see Lerner et al., 2007 and Montoya et al 2013.

Enteroviruses are more difficult to treat but pooled human IgG given intravenously proved effective in patients diagnosed and treated early.

Rituximab infusion – a B-cell suppressor, proved effective in 60% of patients. An extensive 5-centre clinical trial is currently under way in Norway, Fluga, Mella et al.,  2011.

Other organisms, see above, e.g. lyme will need separate protocols.

An important and low key development is the use of antiretroviral drugs to treat ME indicating a possible role for endogenous (or exogenous) retrovirus in the illness. A number of clinicians in the USA, Deckoff-Jones, and the UK have given antiretroviral drugs to a small number of patients with very encouraging results. This novel therapy should be evaluated in a small controlled clinical study.

References available from Malcolm Hooper on request.