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

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:

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.

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.

 

Hi A and S and young patient on GDC. Wondered if the committee is now complete as I believe the GDC met on the 29th March?
I do hope the vibes were encouraging but I am not holding my breath........

 

We still don't have a community paediatric nurse but meetings are going ahead.

 

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.

 

This seems easy to answer: if ME/CFS is no longer a diagnosis that is convenient for them, they will try to replace it with one that is. This is true also for rehab services.

 

I can't remember now - does the guideline not include diagnostic criteria also?

 

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.

 

But surely a final diagnosis is not down to the GP?

 

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.....

 

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.

 

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.

 

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.