Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018

My thoughts about the NICE stakeholder meeting:

@Keela Too has admirably summarised the format of the meeting and the main proposals I suspect put across on all six discussion tables.

My only personal quibble would be that I think ME/CFS or CFS/ME are sensible terms to retain, partly because I see ME on its own as likely to alienate even more potentially unsympathetic doctors. I don't think 'ME and CFS' is helpful because that either suggests that there are 'two diseases' which there are not, or that the guidelines are intended to include 'not ME' i.e. 'chronic fatigue' which is actually not what is wanted. Moreover, it is not a matter for NICE what doctors call illnesses, so any request to NICE for a change will be by definition window dressing, and I worry that obscures the important issues.

I agree that perhaps the key general point, which we also touched on, was that the guidelines should not imply that professionals should 'know what is needed' and present patients with certainties but rather be open about the fact that nobody is sure what the best thing to do is.

What intrigued me most was the elephant in the room - the reason why we were there at all, which was not mentioned once by the speakers from the floor and I suspect hardly at all even in the groups - the need to remove recommendations for CBT and GET. It nevertheless became clear that the NICE staff were absolutely clear that this was why we were there and that they had taken on board that this was not an issue for a few minority activists but essentially for all patients. At our table the facilitator said 'I presume everyone here is agreed on that' - despite the fact that a paediatrician and an occupational therapist were present who I suspect may not have realised this was why we were there and for whom these remained standard practice.

In terms of the mix of 'stakeholders', my impression was that about half were from patient organisations and of one mind about CBT and GET. There were some professionals, including the ones I mentioned, but my impression was that psychology was barely represented, with the exception of Dr Michael Sharpe. I don't know how things went on that table but Lady Mar was also there!

I presume that knowing the guest list the organisers decided to make it impossible for any open debate to arise between stakeholders, on the assumption that it would lead to acrimony. Any reference to any sort of dissatisfaction with specific treatments was studiously ignored by floor speakers. That seemed disappointing. However I think the two outcomes one might have hoped for in this respect were both fulfilled. NICE heard a uniform opinion from all patient related groups that CBT and GET were not wanted. Moreover, whether in the pub or at the meeting patient advocates had a good opportunity to compare notes and get a sense of solidarity.

On the down side I think we may have spent too much time, at least at our table, asking for things that people should not expect NICE to help with. I think a lot of time was taken up with asking for a beefed up service. I am sure there should be a beefed up service - indeed just a service would be a start. But I do not think that is what NICE is about. Their job is to give guidance on what a service should provide if there is one. The real problem is probably with NHS England or Mr Hunt not finding funds. I personally think the old guidelines are actually pretty reasonable on most issues although there could be a greater sense of urgency.

Time was also taken up with suggestions based on doubtful 'science'. There was a request for doctors to be able to be more flexible in using treatments that might benefit individuals even if there was no firm evidence from trials. That seems to me the sort of thing not to ask for because it immediately allows the BPS side to argue the same. There is no good reason to think that antivirals and such like really do any good to anybody and it is going to be so easy for a committee to dismiss patient requests if they are seen as inconsistent. There was also a suggestion that there is scientific evidence for GET being bad for patients but the reality is that there is none. We simply have the experience of patients to go on. In normal healthy people certain types of exercise, like repeatedly stepping down on a treadmill, cause damage to muscle over a period of days. However, there is no reason to think this is bad in the long term and if you do a sport that requires such actions you need to work through the damage phase. So 2 day CPET results are interesting but they do not provide a reason not to use GET.

All in all it seems to me that something important has been achieved but there is still more work to do. NICE are very clear that the great majority of patients believe that CBT and GET are worse than useless. They realise that a committee must not be made up entirely of psychiatrists. However, when the committee comes to look at the evidence the only evidence for treatments working they will find will be on CBT and GET. It is going to be hard for them to not at least mention that there is supposed to be some evidence. Hopefully that will not be followed by a recommendation. However, I sense an attitude even amongst physicians and paediatricians that if CBT and GET are not available they will have nothing to offer. A lot of doctors find that uncomfortable. They should not but they do. So there will be a tendency for CBT and GET to remain in the guidelines even if watered down. That will depend to a degree on who is on the committee. That needs some thought. Applications are being taken in June and July.
 
@Jonathan Edwards or @Keela Too - Charles Shepherd's account says that NICE is looking for up to 4 "lay members". Is this the terminology that was used? If so, I find it troublesome that they are specifying the inclusion of patients or carers who know fuck-all about science or research, as it implies the exclusion of patients with any sort of scientific background.

I'd much rather see patient experts involved as much as possible - people who know the research, its flaws, the politics, etc. Otherwise it doesn't matter how many patients involved, if they're only allowing the ones unequipped to substantially contribute to come to the table.
 
@Valentijn and @Trish

They are very much looking for people with relevant experience, including understanding of the science amongst the patient/carer 'lay' members. They describe it as a bit like a job application where you state your reasons for why you might be a good committee member.

The NICE people on our table were interested in the science, and noting some studies down, such as the Hornig 3 year difference in Cytokine one. Probably not the actual title!
 
MEMarge said:
@Valentijn and @Trish

They are very much looking for people with relevant experience, including understanding of the science amongst the patient/carer 'lay' members. They describe it as a bit like a job application where you state your reasons for why you might be a good committee member.

The NICE people on our table were interested in the science, and noting some studies down, such as the Hornig 3 year difference in Cytokine one. Probably not the actual title!
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Do people have to physically attend committee meetings or is it done in virtual meetings (or options to join by phone) using a phone/skype.
 
Above link includes comments on Skype etc and video conferencing. I do not know whether that is to virtually attend a meeting or to provide input in an additional way.
Our table leader's last Guideline was on End of Life Care, so for that there needed to be different ways for patients/carers to interact/provide input.

I do not know the number of days of meetings that there will be. Someone with experience of the last Guideline process, not herself a lay member, said she thought it would probably be about 20 meetings over the 2 year period. Don't rely on that. I will pm you
 
So glad I wasn't! on the table with MS.

Natalie Wright was on it, next to Lady Mar and said it was going well at tea-break.

Didn't really notice others. It was a pretty busy time, just concentrating on our table discussions really.
 
Jonathan Edwards said:
However, I sense an attitude even amongst physicians and paediatricians that if CBT and GET are not available they will have nothing to offer. A lot of doctors find that uncomfortable. They should not but they do.
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I think this is a huge issue.
If we are going to stick with evidence then the "something is better than nothing" approach needs to be kicked out.

It would be far better if they offered Nothing and doctors realised that that was the reality, rather than hiding behind non treatments to ease their guilt.

I would prefer a blank page of treatments rather than a dodgy list of half assed treatments.
 
Just a few comments from our table, same one as Sally Burch's.

We did not spend time on dodgy science/unproven treatments but did talk about overlapping/comorbid conditions, such as POTS and EDS.
I have become increasingly aware of these two, from a Mum's Facebook Group that I've joined fairly recently, and also from work on MUS. Also Julia Newton's fatigue clinic often finds POTS.

We discussed the rationale behind the reasons not to push exercise from a biomedical perspective. This is namely the block in energy metabolism shown by several researchers alongside the switch to anaerobic metabolism at low exercise levels. The abolition of GET, PACE-style CBT and the need to reanalyse the results from PACE using the raw data released as a consequence of the FOI tribunal were very definitely discussed and noted.
 
BurnA said:
I think this is a huge issue.
If we are going to stick with evidence then the "something is better than nothing" approach needs to be kicked out.

It would be far better if they offered Nothing and doctors realised that that was the reality, rather than hiding behind non treatments to ease their guilt.

I would prefer a blank page of treatments rather than a dodgy list of half assed treatments.
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I was delighted to be told in Berlin that "you do realise that there's nothing we can do for you". At last an honest doctor. Patients really don't mind being told this if it's the truth. Pity some doctors seem to have such a hangup about it, and an even bigger pity that patients have to needlessly suffer because of it.
 
MEMarge said:
They are very much looking for people with relevant experience, including understanding of the science amongst the patient/carer 'lay' members.
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This is what the NHS website says about what they expect from a lay person (live version doesn't work, so this is the cache):

So, what?
The lay member is one of the people (but not the only one) who ensure the public voice of the local population is heard and that opportunities are available for PPE [Patient and Public Engagement].

But they can’t know everything. Some expect a lay member to be a total content expert (ie in how the NHS works as well as everything to do with PPE). But it is their process skills that are key.

At the heart of these process skills is emotional intelligence: the ability to monitor one’s own and others’ feelings and emotions, to discriminate among them and to use this information to guide one’s thinking and actions. This includes the skills of dialogue, especially listening; identifying and working with assumptions (their own and those of others) and asking. It also involves being able to develop trusted relationships and to influence. Not easy! All leaders – professional and patient – should aspire to these qualities.

The lay member should ask the powerful question - they are the so-what person because they ask questions such as:
● ‘So, what are we doing to ensure public and patients’ views are heard and responded to? How are people’s views making a difference?

● ‘So, what difference will this discussion, decision, etc, make to patients and the local community?

The lay member should not do engagement (they are not the engagement practitioner), but are the catalyst for the CCG [Clinical Commissioning Group] to undertake high quality engagement. They scrutinise the process and outcomes.

They may not know everybody in the community or all the groups to go to, but should know a person who can help. This assists the CCG to build trusting relationships with LINks/HealthWatch and others. It is, ultimately, the board’s responsibility to assure the CCG that PPE-led intelligence is informing commissioning decision-making.
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A well-supported lay person working with the CCG should expect to:

● Be valued and listened to as an equal in any debate
● Offer informed constructive challenge and interventions
● Draw on sources of information or support outside the CCG and bring them coherently into the discussion

● Initiate action, not merely respond to issues, including identifying topics for the CCG to consider.
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What matters to patients - the patients’ dozen

The things that matter most to patients and representatives will help focus the CCG on these priorities.

1. Getting better, feeling better (outcomes of care)
2. Getting the right care from the right people (clinical quality)

3. Being treated as a human being (humanity of care)
4. Information, communication, having a say (shared decision-making)

5. Being supported (practical and emotional)
6. Support for carers
7. A safe, clean, comfortable place to be (environment of care).

The above should be there at each stage of our care.
The following concern what those stages might be.

8. Right treatment at the right time (access 1)
9. Right treatment in the right place (access 2)
10. Smooth transitions (continuity)
11. Continuous care (after care)
12. Support for independence.

Beyond these, specific groups or individuals from different parts of society face particular barriers to get the things they need. Therefore, diversity, equality and human rights issues are central to all 12 dimensions.
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I'm getting the distinct impression from that that they do not think patients can be or should be involved with the research or scientific aspects. But the actual role descriptions for recruiting lay members are a bit better:
NICE uses the term ‘lay member’ to refer to a member of a committee who has personal experience of using health or care services, or is from a community affected by the topic area. A lay member can also be someone with experience as an unpaid carer, an advocate, or a member or officer of a voluntary organisation.
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As a lay member, we are looking for people who can help to ensure that the views, experiences and interests of people affected by the guidance inform the Committee’s work. This may include:
  • identifying issues of concern to people using NHS, public health or social care services.
  • making sure that patient, service user, carer or community views are taken into account
  • Raising awareness of any studies known to you (for instance, surveys of patients/service users or community views and experiences) which highlight issues that may inform the work of the Committee
  • reviewing evidence and draft recommendations from a patient, service user, carer or community
  • perspective (for instance, did the research address issues or outcomes that people affected by the
  • guidance consider important? Do the recommendations take their views into account?)
  • highlighting areas where the preferences and choices of those affected by the guidance may need to be acknowledged
  • helping to ensure appropriate consideration of equality issues
  • advising on implementation issues as needed
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Personal Experience and Knowledge

Essential
  • An understanding of [the subject] and the issues important to patients and unpaid carers gained:
    • through personal experience you have of treatment and care provided for you by the NHS
    • as a relative or unpaid carer of someone who has used relevant health services as a volunteer or employee of a relevant voluntary organisation or support group.
  • Knowledge of the experiences and needs of a wide range of people which gives you the ability to champion patient and carer perspectives on this topic

Desirable
  • Familiarity with using research and evidence to reach a conclusion.
  • An understanding of issues relating to equality.
Other skills and abilities

Essential
  • Ability to articulate patient, carer, service user, community or public experiences and perspectives in the discussions of committee with a wide range of experiences.
  • Ability to use word processing and the internet, and a willingness to communicate by email.
  • Time and commitment to attend meetings, read papers, and comment on draft documents produced by the Committee.
  • Good communication and team-working skills, including respect for other people’s views, and the ability to listen and take part in constructive debate.
  • Ability to maintain confidentiality.
  • Commitment to work within and follow NICE policies including the Equality Scheme.
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So they do seem to make some allowance for patients to talk about research, though there is no expectation or real encouragement of it. I think we might be in a bit of a unique position with ME/CFS, as many of the "experts" who should be interpreting the research for us cannot be trusted do so in an honest and competent manner.

We're going in with the expectation that our most important task is ensuring a fair assessment of the research, while NICE operates on the general assumption that patients don't need to do that. I'm a bit nervous about how they'll respond to that level of involvement, and if they'll try to avoid it, possibly by selecting less-informed patients.
 
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MEMarge said:
We did not spend time on dodgy science/unproven treatments but did talk about overlapping/comorbid conditions, such as POTS and EDS.
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I am unclear about these. From what I have heard the orthostatic intolerance in ME/CFS is probably mostly not POTS. And I have yet to see convincing evidence for any real association with hypermobility - which now tends to be called EDSIII. I know these associations are often talked about but the people close to me at work who talked about them did not seem to have any reliable evidence. OI is clearly an important symptomatic issue but I am unclear that hypermobility is really of relevance to guidelines for ME/CFS. People who get dislocations from major hypermobility need management for that and I do not see it as having anything much to do with the problems of ME/CFS.

MEMarge said:
We discussed the rationale behind the reasons not to push exercise from a biomedical perspective. This is namely the block in energy metabolism shown by several researchers alongside the switch to anaerobic metabolism at low exercise levels.
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I don't actually think there is any rationale here. Various researchers have shown possible alterations in energy metabolism. But there is not so far any great consistency in findings. And whatever the findings may be I don't think they are a reason not to exercise. Elite athletes constantly push themselves to the limits of their energy metabolism and nobody thinks it is a problem. The reason not to exercise for PWME is that it aggravates symptoms. I constantly worry that if PWME try to convince the powers that be with arguments that do not actually have a scientific grounding then there will just be loss of credibility.
 
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