NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

Can anyone please refer me to what NICE are doing regarding seeking information from the severely ill adult population? Who’s doing this , I’ve not seen anything at all anywhere.
I know the Oxford Brooke’s is organising the seeking of input from children but I have not seen anything seeking input from severe adults And I don’t want to miss this opportunity.

I would see offering a long phone as the only way i participate unsuitable undoable and discriminatory. Very severe ME especially has communication and extreme weakness as just given factors but there are other ways to communicate. Eg nhs has to offer a text solution to its help lines.Afaic opening up severe ME input opportunities but restricting it to long phone calls is like “welcoming” us to research but saying we have to be able to walk about for it. It’s immediately excluding those who they know least about. I hope people can appreciate Home visits aren’t necessary, tolerable or the answer but there are other accommodations that could be made

I fully agree with the comments regarding children. I would struggle with a ten minute verbal conversation on the phone but I have lots I want to communicate about our experience and feel I contribute at a worthy level in this forum by sometimes building up my comments over time, that someone else could fire off in two minutes, despite my severe issues with communication..

AFME indicated previously that all accommodation would be made? Is this not now the case?
 
adambeyoncelowe said:
I've replied to hopefully clarify. What NICE doesn't want is anecdote (John Smith said...) but you can pool survey data (17/20 patients said...). You can even say, '17/20 patients said... Comments included...' So long as it's not n=1, basically.
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This is the reaction to the oxford Brooke's/ AfME evidence process. Too many simply cannot participate and want to have their voice heard.
How do you square this circle?
 
Amw66 said:
This is the reaction to the oxford Brooke's/ AfME evidence process. Too many simply cannot participate and want to have their voice heard.
How do you square this circle?
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There are two separate issues here. I was replying to the Twitter post where someone was saying they can't send in questionnaires. I was saying they can via the call for evidence.

The OB/AfME is a separate issue, albeit one connected in many people's minds. It's not going to include everyone's voice by default. A focus group is supposed to find a selection of voices that are somehow representative. A focus group can't, by definition, include everyone.

But people can participate in the general call for evidence even if they can't take part in that focus group. Surveys are exactly the sort of thing that can be done.
 
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Amw66 said:
This is the reaction to the oxford Brooke's/ AfME evidence process. Too many simply cannot participate and want to have their voice heard.
How do you square this circle?
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I think we have to consider what NICE can be expected to do and what they should base it on.

As I understand it the main function of the committee is to provide evidence-based recommendations for what is though to be useful management for the benefit of health professionals and commissioning groups. So in simple terms what actions have been shown to be effective or what the scope of the need for support is.

Personal accounts from patients are not going to provide an evidence base for specific treatments. Input from patients can provide an indication of the scope of need for support. However, to be of direct use for recommendations the input needs to give some indication of what is representative.

I actually suspect that this sort of information gathering cannot be expected to provide anything truly representative. I agree that severe cases are likely to be under-represented. The only realistic way to gauge needs would be for a systematic survey within a health area as a research project - a but like the ME Biobank has done. I am not sure that the cost would be justified since people like Caroline Kingdon already know what the level and spectrum of need is like from repeated visits to patients.

My impression from what I have seen so far is that there will be calls at the committee to increase intensity of support long term. What more specifics can reasonably be added to that I am not sure. Specific interventions need to be evidence-based. If the committee does not stick to an evidence base then CBT, GET and the Lightning Process go through on the nod.

Maybe on S4ME a survey could be done just to highlight key points for severe cases. There could be a poll on the 10 most important things for NICE to know about support needed for severe cases. If there were 20+ contributors to the survey that ought to qualify. So far it sounds as if nobody has volunteered to put in a S4ME contribution. Maybe it would be an easier way than phone calls.
 
Isn't the purpose of this 'evidence collecting' from patients about demonstrating the need for care and support (and how this is currently not being met), rather than informing 'evidenced based treatment'?

Surely, what ME patients desperately need in the updated guidelines (for both adults and children) is to have a comparible recommendation to what the NICE quality standard advises for people with autism. E.g.:

https://www.nice.org.uk/guidance/qs51/chapter/Quality-statement-3-Personalised-plan

https://www.nice.org.uk/guidance/qs51/chapter/Quality-statement-4-Coordination-of-care-and-support

Edited to add:

One of the main reasons we need a comparably strongly worded recommendation for 'post-diagnostic' support is that many of our GPs refuse to monitor us or to provide evidence for social care needs etc. My GP tells me there is 'nothing she can do for me'. When I said she at least needed to monitor and record the nature and severity of my M.E. symptoms and review any changes, she just looked at me blankly. She also told me helping me get adequate social care support (via providing medical evidence of need) was 'not her job' (and I have autism too)!
 
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Amw66 said:
The fact that this has not been fully considered, or potential user groups checked out to determine how engagement can best be achieved speaks volumes.

We start from an assumption, from the existing view of illness groupings, with little thought of how technology can make things easier.

If you can't adequately define the groups, ( or indeed accept the definition of severe that paediatrics seems obsessed with) nor appreciate the obstacles to participation at the start, what will be the quality of the evidence?
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It was discussed at length; how technology can be used and they assured us it would not be a problem including children or parent writing in with their experiences and the chair was given a book with the problems we have. This is why I'm so upset that they have changed as they did with the name and taking CBT and GET down. Trust amongst the young people and their families has been lost and they are not engaging, which can't be allowed to happen.

We play this ridiculous game of smile and take what ever they give us because we have to fight FII accusations all the time and this is because the myths and misinformation that is allowed to continue along with bad science (I know I am preaching to the converted so to speak) If doctors had followed the guidelines about recording on going care this would never happen. The pattern and our understanding would be there for all to see, but they are allowed to cherry pick what information they can use.

At the engagement meeting and again at the scoping they assured us and they were aware and would do all they could and should have been prepared with both children and the relevance to go up to 25 as per the Education and Healthcare Plan as this now encompasses social care.

The severely effected adults I made sure this was covered, and none of the can't go to work or school but bedbound those bedbound most or all of the time along with parents falsely accused as this is the most upsetting for our children health and wellbeing.

FII is now the go to diagnosis of children that can't go to school and is now having a dramatic effect with the MUS and FND confusion and EDS is now in the guidelines look for FII and not the illness. They assured us they had it all under consideration.
 
Simbindi said:
Isn't the purpose of this 'evidence collecting' from patients about demonstrating the need for care and support (and how this is currently not being met), rather than informing 'evidenced based treatment'?

Surely, what ME patients desperately need in the updated guidelines (for both adults and children) is to have a comparible recommendation to what the NICE quality standard advises for people with autism. E.g.:

https://www.nice.org.uk/guidance/qs51/chapter/Quality-statement-3-Personalised-plan

https://www.nice.org.uk/guidance/qs51/chapter/Quality-statement-4-Coordination-of-care-and-support

Edited to add:

One of the main reasons we need a comparably strongly worded recommendation for 'post-diagnostic' support is that many of our GPs refuse to monitor us or to provide evidence for social care needs etc. My GP tells me there is 'nothing she can do for me'. When I said she at least needed to monitor and record the nature and severity of my M.E. symptoms and review any changes, she just looked at me blankly. She also told me helping me get adequate social care support (via providing medical evidence of need) was 'not her job' (and I have autism too)!
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The call for evidence is two-pronged. It's looking at the care and support needs, but also about patient responses/attitudes to treatment. Please don't let us forget this second part.

This 'grey literature' would form part of the evidence base for 'evidence-based treatment'. If all we get is surveys saying voodoo is what patients want, and that it works, then we'd have to bear that mind.

If you don't want voodoo recommended, then it's best to produce robust evidence of what you do want. If 50 people say the same thing, that's more convincing than if it's just one person. We want the most convincing evidence we can get.

I don't think I can be any more clear on this without getting into trouble.
 
rvallee said:
This is a specific restriction knowing it will only include psychosocial trials. Blatant, as usual.
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No, they're saying they aren't going to include trials without a comparison group (eg "treatment as usual"). What is notable is not that they discard noncomparitive studies, but rather they're willing to include studies that have comparison groups that aren't control groups.
 
Simbindi said:
Isn't the purpose of this 'evidence collecting' from patients about demonstrating the need for care and support (and how this is currently not being met), rather than informing 'evidenced based treatment'?

Surely, what ME patients desperately need in the updated guidelines (for both adults and children) is to have a comparible recommendation to what the NICE quality standard advises for people with autism. E.g.:

https://www.nice.org.uk/guidance/qs51/chapter/Quality-statement-3-Personalised-plan

https://www.nice.org.uk/guidance/qs51/chapter/Quality-statement-4-Coordination-of-care-and-support
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Yes, that was my conclusion. The problem that I see is that in practical terms there is no real way to get 'representative' information so the only real value is in making committee members aware of salient problems that can occur.

I think we can be certain that some committee members, and I suspect all, are aware of these problems already. Adambeyoncelowe, Keela Too and Saranbonser are clearly aware. Caroline Kingdon, Luis Nacul, Willy Weir, Ilora Finlay and Charles Shepherd are aware. I strongly suspect that the others are aware, although some of them may have different beliefs about the significance of the problems.

As I say, it might be useful to draw up a list of key problems from a forum poll.

I looked at the autism sites and my feeling there is that you don't actually want things like that because they say nothing at all. They say each person should have a personal plan. That is a phrase used throughout the politics of the NHS to pretend something specific is being done without bothering to say what. It means that all sorts of healthcare professionals have a job to do, but nobody has asked whether it is a useful job.

Instead of that I think you want specifics. Specifics about wheelchairs, about sensory sensitivities, about reviewing diagnosis and so on. My understanding is that these things are all being thought abut by the committee.
 
adambeyoncelowe said:
This 'grey literature' would form part of the evidence base for 'evidence-based treatment'. If all we get is surveys saying voodoo is what patients want, and that it works, then we'd have to bear that mind.
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But in the absence of any real evidence-based treatments, isn't the most clinically useful thing for what patients say and describe to actually to be believed? For example, my GP will only write things on my medical notes like, 'she says she falls over', 'she says she has tremors' (even when I've had them in the actual consultation), 'she says her symptoms worsen after trivial exertion' etc. This is even when I've had an independent support worker and/or professional advocate with me during the consultation, telling her they've witnessed all these things. Would a GP only write, 'she says she falls...'etc., if I had Parkinsons or MS?

None of the charities' surveys seem to be getting a handle on just how severe this appalling treatment and disbelief of patients is. It's not just about getting more follow up for the severest (I am currently severe), it's about getting monitoring and coordination of care for all severities, including 'mild' [sic].
 
Jonathan Edwards said:
Instead of that I think you want specifics. Specifics about wheelchairs, about sensory sensitivities, about reviewing diagnosis and so on. My understanding is that these things are all being thought abut by the committee.
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Well, I want specific recommendations such as an electric wheelchair, but I also want a personalised care plan. Care plans are drawn up from a person centred perspective, with the involvement of the patient. Of course I don't want a care plan that has been written without involving me.

I am involved in the autistic self-advocacy groups in the UK (and internationally) and we do, definitely want our health and social care to be monitored and coordinated, with a key person having the overall responsibility. The NAS is pretty useless, they don't represent the views of most autistic adults. I don't know what autism sites you looked at, but look at Autistica in the UK and the Westminster Autism Report:

https://www.autistica.org.uk/

https://westminsterautismcommission...016/03/ar1011_ncg-autism-report-july-2016.pdf
 
Simbindi said:
I don't know what autism sites you looked at, but look at Autistica in the UK and the Westminster Autism Report:
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I just looked at this sites you posted.

I agree that are plans should be person directed and involve the patient. But I have always assumed that throughout 40 years of being a doctor. When I hear people use these terms it is always in the context of window dressing, usually be a 'multidisciplinary team'. A named link person is good but if the staff who are delegated that status turn over every nine months it doesn't actually achieve anything.

My big worry is that writing out all this stuff gives the impression something is being done when it isn't.

I think we need to get doctors to understand what the problem really is. But a NICE committee cannot do that on its own.
 
Jonathan Edwards said:
I think we need to get doctors to understand what the problem really is. But a NICE committee cannot do that on its own.
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I agree. But specifying and describing PEM as well as stating that POTs, orthostatic intolerance, cognitive dysfunction and sensory sensitivities can all be severe in patients, would help get across to GPs that ME patients aren't exaggerating their symptoms.

It should also be stated that thorough neurological investigations should be made to exclude other comorbid conditions, before tremors are considered to be part of the M.E. or just 'idiopathic'.

I think it would be helpful to patients if the guidelines specify that ME can lead to significant communication difficulties - hence ME patients should have these needs considered within the context of the new Accessible Information Standard, which gives the right to advocacy in consultations and forces doctors to accept written communications, including emails. I don't know if anyone is aware of research that highlights these specific problems in PWME that could be submitted?

Recommending powered (self-propelled) wheelchairs for both 'moderate' and 'severe' may help change the narrative that we need to be encouraged to exercise more. It should be noted that manual wheelchairs are useless if you live alone or with only children or other disabled family members as ME weakens the upper body and arms as well as the legs.

So many people have problems with occupational therapists, so listing the need for an assessment of the needs and appropriate home adaptations to prevent worsening of our symptoms and PEM, would go a long way to improving daily living. The same for recommending a social care assessment (that's why I suggested recommending a care plan and key worker - it puts across that daily living help and care is not a 'luxury' for PWME, that we are seriously ill patients).

I randomly read a comment by a single mum with ME responding to an article on social care. She had had her child taken away because she was unable to care for them without social care help. The OT and social worker had said she was just 'too lazy to get out of bed'! That comment was posted January this year. She would have got more sympathy and help if she were a drug addict or alcoholic. Everything would have been done to 'keep the family together'. The narrative of the revised NICE guideline must make it clear PWME are not 'lazy' or 'choosing to be ill'.

Just having all these sort of recommendations in the guidelines, so that they can be quoted to the GP/OT/social worker or other health professional will at least allow PWME to take more control of the narrative in consultations and assessments. Also, the same applies with the DWP, who currently don't even consider PWME to have cognitive difficulties unless they have a comorbid condition.
 
Jonathan Edwards said:
A named link person is good but if the staff who are delegated that status turn over every nine months it doesn't actually achieve anything.
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The person named to have the overview and to be responsible for monitoring healthcare could be the patient's GP, especially if there isn't a social worker involved or if there is no specialist ME/CFS service in the area.
 
Simbindi said:
The person named to have the overview and to be responsible for monitoring healthcare could be the patient's GP, especially if there isn't a social worker involved or if there is no specialist ME/CFS service in the area.
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Yes, but then the GP became the named person responsible for monitoring all their ill patients anyway when they took the job. If someone actually needs to point that out there is something wrong. (And I agree there is definitely something wrong.)
 
strategist said:
Maybe a part of the problem is that patients cannot communicate effectively when before actually talking to the doctor they have probably spent a while under orthostatic stress and their brain isn't well supplied with blood.
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That's such a huge problem. By the time I get to my GP's office I am so utterly drained I can barely communicate or pay attention and badly need to rest. This is especially bad for new appointments, as it becomes necessary to bring notes and generally speaking physicians hate this so much most of them completely turn off, sensing they are in the presence of a munchie and wanting to end the consult ASAP. This is a lethal barrier to us if it is not properly made into recommendations. No one is surprised when someone with the flu is so out of it they can barely do more than grunt. This isn't supposed to be this confused.

The travel alone, the long wait on an uncomfortable chair in a noisy, crowded, brightly lit chaotic mess of a clinic is completely draining. As basic professional failure this amounts to asking patients to run around to exhaustion before taking a pulse rating and reporting, as if accurate, that holy crap this clinic is seeing a dangerous epidemic of high pulse and blood pressure. It's beyond amateur to not pay attention to this stuff and the same should obviously apply to a guidelines drafting process.

As a programmer, I equate this as a computer technician not even checking that the computer is plugged in or not understanding that a power cut means computers can't run. It's fired on the spot level of incompetence. The whole point of having professionals in the first place is that they are supposed to know better than this and yet their involvement is basically aggressively ignorant on those basic points because of the disinformation that dominates this disease.

Accommodations like remote consults and asymmetric methods like text are a must in order to bridge the communication gap. This is 101 stuff, it shouldn't even had to be so forcefully insisted upon. It's basic common sense that you don't place barriers to communication in front of sick people.

It's normal that focus groups can't include everyone, but the bias should be towards the sickest patients, not against it. They are the ones with the most pressing needs and systematically excluding them is one major cause of the current failure.
 
Simbindi said:
But in the absence of any real evidence-based treatments, isn't the most clinically useful thing for what patients say and describe to actually to be believed?
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Please bear in mind that the current NICE guidelines from 2007 already say that this illness is real, that patients should be believed and have their illness acknowledged, and that treatments should be individualised. That hasn't made a difference to many people.

Doctors who are prejudiced against ME will remain prejudiced. And people who ignore the NICE guidelines now will continue to ignore the NICE guidelines in future.
 
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