NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

Sarah said:
Yes - see post #777.

Wrt amitriptyline, the case study only has:
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thanks Sarah I will have a look at this.
Given that some are serotinergic the lack of side effects being highlighted is a bit worrying. Amitriptyline also has liver impacts.
 
Some notes on the chapter authored by Jennifer McIntosh in the Manual of Dietetic practice 5th ed:

7.6.5 Chronic Fatigue Syndrome / Myalgic Encephalomyelitis under s.7.6 Neurological disorders.

WHO classes as neurological disorder.
Prevalence: 0.2-0.4% (DoH 2002, White et al 2007)
Four times more common in women than men.
Most common age at onset is 40-50 years.
Less common in children, but children can devELOP CFS/ME, particularly during adolescence (14-15yrs).
In the UK, NICE (2007) diagnostic criteria are used.

It provides the NICE diagnostic criteria but misses off some of the optional 'and one or more of the following symptoms', lists NICE's 'red flag' symptoms to be investigated before a diagnosis is made, and gives descriptions for the classification as mild, moderate and severe.

Prognosis:

Most patients will show some degree of improvement over time, especially with treatment.
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It goes on to state that a substantial no. have a fluctuating course. Significant minority become severely and perhaps permanently disabled. (Cairns * Hotopf, 2005, DOH 2002).

Nutrition problems:
- Weight gain due to reduced activity, increased eating to boost energy, comfort eating, meds.
- Weight loss more common in children and those w/ nausea.
- IBS: 60-70% of CFS/ME patients (Rao et al 2009) report IBS symptoms.
- Nausea: some evidence of delayed gastric emptying
- Food intolerances.
- Osteoporosis due to lack of sunlight exposure and weight-bearing.
- Reactive hypoglycaemia

There are brief sections on nutritional assessment, clinical assessment and dietary assessment, including a list of the blood tests recommended by NICE, BMI and dietary and weight histories.

Management:

Pharmacological interventions for symptom control for sleep, mood disturbance, IBS, menstrual probs. Acknowledges some patients report sensitivity to medications, though there is no evidence for this.

Most common prescriptions are for antidepressants and melatonin. SSRIs may be prescribed for anxiety. Side effects can include weight gain, food cravings and GI effects.

Cognitive Behaviour Therapy

In CFS/ ME CBT aims to reduce the level of symptoms, disability and distress as part of the overall management. A number of randomised controlled trials (Deale et al., 1997; Sharpe et al., 1996; Prins et al., 2001; Rao et al., 2001; Taylor et al., 2004; Cox, 1999; Stulemeijer et al., 2005) have reported beneficial effects with CBT on physical functioning, fatigue and global improvement. Two studies (Cox, 2002; Friedberg & Krupp, 1994) have shown no significant difference. It is recommend that CBT should be offered to people with mild or moderate CFS/ ME (NICE, 2007; White et al., 2011).
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Graded Exercise Therapy

Graded exercise therapy relies on negotiations between the healthcare professional and the patient, and involves appropriate physical assessment, mutually agreed and meaningful goal setting and education. Initially, an achievable level of physical activity is agreed, followed by gradual and planned increases that are individually tailored to the patient. A number of randomised controlled trials (Fulcher & White 1997; Wearden et al., 1998; Moss-Morris et al., 2005; Wallman et al., 2004; Powell et al., 2001) have shown significant improvements in fatigue and physical function. Again, NICE (2007) recommends that people with mild or moderate CFS/ ME should be offered GET.
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There is also a section on pacing which describes it as energy management which attempts to maximise activity while avoiding setbacks caused by overexertion. It states the evidence to support pacing is equivocal.

Also mentions activity management, sleep management, relaxation, relapse and setback advice and mindfulness cognitive therapy as other interventions that patients have reported finding helpful.

Section on nutritional management refers to eating a balanced diet, small regular meals, adequate fluid intake, low GI foods and other practical advice. There are small dedicated sections on weight gain and reduction, nausea, food allergies and intolerances, bowel symptoms, supplements and CAM.
 
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Tilly said:
I think they are playing on the fact we will wait and see. Once the process has begun we will have no say and even if the laypeople object they will overrule as they did before. Not that we can do anything now anyhow, that time has past I feel.

Luis Nacul will be used as the balance and I would hazard a guess they are not announcing the others because they are either trying to get balance or the members/chair are refusing the ones put forward.

This is how I see it pan out:

All the main players are in the new or only CFS centres, all are psychological based. They are the only ones that know ME/CFS because they treat and have the research; that will be their argument. All other doctors are taken down including the ones who believe EDS is not a psychological behavioural condition (MUPPETS), children are already having EDS diagnosis taken from them and most parents don't know about the problem, as it is never discussed. POTS is just an anxiety so this again will be dismissed.

There are no doctors left that treat ME/CFS as an illness, or they hide so they don't get taken down. Patients asked for centres to be closed because of this problem especially with the children. This is an important point due to the fact parents need letters to give to the school so we have to play the system. We cannot make complaints, again because we get accused of FII and anyhow what Dr do you go to who will stand up for you and your child? Private diagnosis are thrown out and point the finger at FII. If you look up safeguarding on RCPCH and NICE you will see how this is being handled. Who is counting the FII accusations and which Dr or areas make the accusations. What happens to the children when they are taken? You just have to look at Kariena Hansen. Notice the Paediatric said he will still take patients for stays in hospital. How many have this treatment? Remember if children are taken mostly they are gagged by the court.

MAGENTA (among others)about to be released along with the shopping bag trial all the main players are connected to CBT and GET. If you read the comments on the scoping you can see a clear path to Functional Neurological dysfunction, as alluded to on the neurological comment on the draft scoping, this will then become the way to diagnose ME/CFS. In Ireland they are already taking diagnosis away from some that have MS patients that do not have enough lesions or epileptic type fits with no evidence of epilepsy. Celiac can cause fits and this again gets hidden. How many ME sufferers have this type of fit?

Malaise will take over PEM and become illness beliefs, which is why I hate the term. Sickness with no post exertional will be easy to convert the doctors mind and lead into integrated Mental and social health care with isolation being part of this and being promoted by the media, our children are again going to feel pressured into social situations and back to school. This is the main focus on the scoping document. There is no research they would consider that would dispute this and many people will agree this is a good thing to combat - social isolation. This gives them safe ground with full agreement from all, like they did with activity and exercise. They will not be looking at harm or an other treatment?

FII will be brought in as parents who cannot manage their children or emotionally have major issues and seek attention, this is already being played out from my personal experience. There are many radio interviews going on with the main players in the Biophysical SMC. There is a surge in research with mothers who have been accused of having FII. They will be coerce into going into/on to trials so that they can get their children back.

One of the laymembers is a 17 year old who has had ME since the age of 4. I shudder to think how strong this person will have to be defending against the Paediatric that Alena Lerari sat next to.

I have a lot more to say but need a boat load of coffee.

Moderator note: This post and several subsequent ones relating to children with ME have been copied or moved to a new thread:
NICE guidelines and the needs of children with ME
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I feel sad reading this back through has BACME won? I fear so. Unless and effort is targeted and CBT and GET taken down we will loose a lot more children's childhoods and a lot more lives that can not bare the pain of ME that lasts a lifetime.
 
If the published guideline is as hoped, then this will have major implications for health insurers. Where are they going to turn to for their ME/CFS expert advice, now their pet ones will no longer have credibility? How are they going to wriggle out of insurance payments if they can't accuse patients of not trying hard enough with bogus treatments? So long as NICE have not bottled out, the ramifications be ... interesting.
 
That's not an obstacle. They will argue that doctors should prefer the FND diagnosis (or whatever other label they decide is convenient) because it offers a constructive way forward instead of succumbing to therapeutic nihilism. Or some other superficially valid argument.
 
strategist said:
That's not an obstacle. They will argue that doctors should prefer the FND diagnosis (or whatever other label they decide is convenient) because it offers a constructive way forward instead of succumbing to therapeutic nihilism. Or some other superficially valid argument.
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But surely a final diagnosis is not down to the GP?
 
Barry said:
But surely a final diagnosis is not down to the GP?
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Probably not. If there is an "expert" or clinic in the region then the GP would probably refer on for formal diagnosis.

If the GP hasn't already referred you on or the referral might take too long then your employer might request that you see a specialist of their choice. I say request but you may find that the terms of your employment contract mean you can't refuse.

The problem with cr@p like FND and MUS and PPS and all that BS is you can probably shoe horn almost anyone into them, certainly an ME patient.

If you happened to be an "expert" with ties to insurers with a preferred diagnosis or with financial links to rehab clinics that work with people with a preferred diagnosis & no biomarker.....
 
strategist said:
NICE is coming across extremely poorly here.

It's reasonable to ask for a committee with no conflicts of interest or particular ideological attachment. (and by the way, being a patient is not a conflict of interest, it's the opposite, in that patients care most about actual results)
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In light of the recent 'protest' resignations from the committee from 3 professional members with known conflicts of interests and/or clear ideological attachments in response to a finalised guideline that has objectively and thoroughly reviewed the evidence, I wonder if NICE will learn anything from this occurrence, and whether or not this will inform committee make up on other reviews?
 
Regarding the references to Professor Chris Burton, this blast from the past in 2004 makes for a good read, and very telling, predated NICE 2007!
https://www.bmj.com/rapid-response/2011/10/30/re-gps-are-powerless-without-better-models

Rapid response to:

General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study
BMJ 2004; 328 doi: https://doi.org/10.1136/bmj.38078.503819.EE (Published 03 June 2004) Cite this as: BMJ 2004;328:1354
 
I'm wondering what impact the experience of being on the committee has had on those BPS/MUS members who PWME were concerned about at the time they were selected, but have actually signed off on the final guidelines and not resigned.
 
Hutan said:
I was just looking at this thread for an old moderation report and saw @Simbindi's post. @Keela Too; @saranbonser; @adambeyoncelowe - can you say anything about whether other committee members changed their views about anything? Did any of you change your views as a result of looking at the evidence, or talking with others on the committee? Did anything surprise you?
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I'm not sure if anyone changed their views. Rather, I think people thought certain things were untenable with the current evidence base.

Then again, there was broad on agreement on most things. Everyone genuinely seemed to want to help patients.
 
adambeyoncelowe said:
I'm not sure if anyone changed their views. Rather, I think people thought certain things were untenable with the current evidence base.

Then again, there was broad on agreement on most things. Everyone genuinely seemed to want to help patients.
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I don't doubt that everyone wanted to help patients. And I can imagine that, knowing it was necessary to reach a consensus, committee members probably did their best to remain polite and to listen to each other and reach agreement.

However, that's very different from agreeing on everything. It may not have been spelled out in meetings, in order to retain harmony, but I can't imagine everyone on the committee was entirely happy with some of the things that ended up in the guideline. Because of the composition of the committee, compromises were necessary in order to reach agreement.

For example, our S4ME guideline group have highlighted in our commentaries several parts of the guideline that we are very concerned about, such as the sections on CBT as the modality to help with activity and symptom management, and the sections on physical activity and exercise programs, and on sleep hygiene. None of which is evidence based, and all of which have significant potential for ongoing harm in the hands of current therapists who may hold on to their current views and make inadequate tweaks to what they say and do.

I don't blame the patient reps at all for these problematic areas being in the guideline. I'm sure without your presence and that of others with a good understanding of ME, these sections would be a whole lot worse. For example, the section on physical activity and exercise programs is to some extent saved by the caveat that patients should stay within their energy limits.

But if the selection of the guideline committee had not been an attempt to 'balance' between users/ supporters of the old guard BPS approach and those who recognised the lack of evidence of efficacy and the harms of that approach - if the committee had instead consisted of people who understand science and evidence, and who listened to patients' experiences - then there would have been no need for those sorts of compromises.
 
Trish said:
But if the selection of the guideline committee had not been an attempt to 'balance' between users/ supporters of the old guard BPS approach and those who recognised the lack of evidence of efficacy and the harms of that approach - if the committee had instead consisted of people who understand science and evidence, and who listened to patients' experiences - then there would have been no need for those sorts of compromises.
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Agree with all you say in your post Trish. But if NICE had not gone for the 'balance' they did, it is very possible that attempts to get the new guideline pulled completely might have succeeded. As it was, it looks like NICE did everything they could to pre-empt any attempt for the BPS brigade to argue there was bias against them. Given we now know how hair-trigger some of the behind-the-scenes machinations got, it is possible that only failed because there was no chink of bias they could try to prise open and exploit.

Any new guideline was always going to be a compromise, and we could so easily have been looking at something much worse. Or if some had had their way, still stuck with the old guideline.
 
I'm not disagreeing with you Barry, given the politics around this. I'm just hoping next time around there will be no necessity for compromise. I don't suppose I'll live long enough to see it, but I do see hope for the future, and am grateful for this first step.
 
I accept the need for compromise in order to get the worst stuff out of the guidelines, and generally get things moving in the right direction.

But I don't like it one bit, particularly given how skewed the game was to start with.

We still have a long way to go.
 
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