NICE ME/CFS guideline - draft published for consultation - 10th November 2020

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The national competence service for CFS/ME in Norway said:
One gets the impression that any kind of physical activities are harmful. It should be stressed that it is heavy physical activity programmes developed for healthy persons that are harmful, not physical activity by itself.
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They are shooting themselves in the foot with this comment, and are totally unaware.
 
FMMM1 said:
If I were doing a policy paper on this, one of the areas would be - "Financial" (economic benefit) or some such. So if this worked people who are currently not working (and in receipt of benefits/disability benefit) would be well enough to return to work - savings on social security benefits. So when this person highlights "Hope NICE take note of evidence over anecdote here" I'd be expecting evidence of people well enough to return to work post intervention (CBT in this case).

I'll have a wild guess and say that with some very dodgy "assessments" and relying on people saying they had "improved" you might be able to reduce some people benefits. However, if you objectively measured improvement e.g. activity monitors, then you'd find that the intervention hadn't actually produced a sustainable long term improvement.

There's a reason why the American military, concerned about the welfare of soldiers returning from conflict, monitored their phones - to see if they were moving around, making phone calls ---- or not moving around and not making phone calls. If those guiding the program reckoned a few questionnaires were sufficient, then they would have used that, but they are not.

I'm probably being Mr Angry here but I'm finding these people a little annoying. If you're a professional, and therefore, aware of well conducted studies (objective assessment) and poorly conducted studies (subjective assessment), then you wouldn't be relying on the non-professionals pointing out that you're talking crap.
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Further thoughts on this.

These folks talk about numerous studies all finding an improvement with CBT, GET, positive thinking ---. However, the evaluation of these studies did not rely on objective evaluation criteria (activity monitors --- possibly even mobile phone data to assess mobility, social engagement ---) it relied on subjective evaluation criteria - questionnaires.

There was a recent paper, which was reviewed (favourably) on this site, i.e. a comparison of (objective) activity monitoring (time spent upright as measured by an electronic device) versus (subjective) activity monitoring via questionnaires. The outcome of the study was that questionnaires overestimated activity compared to the reference (objective) method - electronic activity monitoring.

So when these people refer to numerous sturdies showing a positive benefit from CBT, GET, positive thinking ---, i.e. studies which used questionnaires, then all they are really demonstrating is consistent positive bias in the evaluation criteria - questionnaires!

Again, we shouldn't have to vet these peoples homework's - they are the professionals. They appear to be unreliable on the basis that they defend invalid studies and they do not acknowledge the need to properly evaluate the outcomes of interventions.

I think @Hutan may be in Norway; maybe the patient community should highlight to their elected representatives, and Government, the "good" - [Fluge and Mella rituximab study used electronic activity monitoring + study evaluating questionnaires and electronic activity monitors]. Sadly the "bad" and the "ugly" pretty much describes the "evidence" these people rely on to defend CBT, GET, positive thinking ----.
 
FMMM1 said:
There was a recent paper, which was reviewed (favourably) on this site, i.e. a comparison of (objective) activity monitoring (time spent upright as measured by an electronic device) versus (subjective) activity monitoring via questionnaires. The outcome of the study was that questionnaires overestimated activity compared to the reference (objective) method - electronic activity monitoring.
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I don't know how these things are done but I have to wonder if the use of monitoring can be seen as truly objective. When this is done is there activity monitoring before the therapy? And for how long?

I've never questioned this when it's come up before but I've noticed that my activity level fluctuates, not dramatically but it does fluctuate and while there is the short term daily small differences there is also I think a seasonal component to this.

I wouldn't want the BPS people to get the idea that any fluctuation (in a positive direction) is all due to their brilliance if they 'caught' me at the right time. I can think of other issues that might make activity readings appear higher but not mean that I am doing better (poor sleep where I toss and turn for hours etc).

Just a concern I thought I'd put out there. Maybe there are ways of allowing for this.
 
Snowdrop said:
I don't know how these things are done but I have to wonder if the use of monitoring can be seen as truly objective. When this is done is there activity monitoring before the therapy? And for how long?

I've never questioned this when it's come up before but I've noticed that my activity level fluctuates, not dramatically but it does fluctuate and while there is the short term daily small differences there is also I think a seasonal component to this.

I wouldn't want the BPS people to get the idea that any fluctuation (in a positive direction) is all due to their brilliance if they 'caught' me at the right time. I can think of other issues that might make activity readings appear higher but not mean that I am doing better (poor sleep where I toss and turn for hours etc).

Just a concern I thought I'd put out there. Maybe there are ways of allowing for this.
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To be honest I was relying on memory, i.e. when I wrote the post you replied to; also, more generally, I don't followed this issue closely.

I agree you'd need to monitor each participants "baseline" so that you didn't attribute normal fluctuation to the intervention. Also, you'd need to monitor (6 months + minimum post intervention?) to ensure that any improvement is long term - life changing.

I think @Jonathan Edwards mentioned that one of the "defences" these people have produced is that they cannot do studies which meet the high standard normally expected of scientists. Firstly I disagree; Fluge and Mella's approach (electronic activity monitors), and the recent study comparing questionnaires and activity monitors, challenge that view. Also, if they cannot do valid studies (test validity of intervention) then they should not be funded by the public nor should these (unvalidated) studies be the basis of Government policy - CDT, GET, positive thinking ---.

We shouldn't have to tell professionals how to do a study --- that's there role --- OK we need to ensure that crap doesn't form the basis of Government policy or indeed public opinion.
 
FMMM1 said:
Further thoughts on this.

These folks talk about numerous studies all finding an improvement with CBT, GET, positive thinking ---. However, the evaluation of these studies did not rely on objective evaluation criteria (activity monitors --- possibly even mobile phone data to assess mobility, social engagement ---) it relied on subjective evaluation criteria - questionnaires.

There was a recent paper, which was reviewed (favourably) on this site, i.e. a comparison of (objective) activity monitoring (time spent upright as measured by an electronic device) versus (subjective) activity monitoring via questionnaires. The outcome of the study was that questionnaires overestimated activity compared to the reference (objective) method - electronic activity monitoring.

So when these people refer to numerous sturdies showing a positive benefit from CBT, GET, positive thinking ---, i.e. studies which used questionnaires, then all they are really demonstrating is consistent positive bias in the evaluation criteria - questionnaires!

Again, we shouldn't have to vet these peoples homework's - they are the professionals. They appear to be unreliable on the basis that they defend invalid studies and they do not acknowledge the need to properly evaluate the outcomes of interventions.

I think @Hutan may be in Norway; maybe the patient community should highlight to their elected representatives, and Government, the "good" - [Fluge and Mella rituximab study used electronic activity monitoring + study evaluating questionnaires and electronic activity monitors]. Sadly the "bad" and the "ugly" pretty much describes the "evidence" these people rely on to defend CBT, GET, positive thinking ----.
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The quality of the evidence has been highlighted in Norway, can't say it has helped any. Unfortunately.
 
Midnattsol said:
The quality of the evidence has been highlighted in Norway, can't say it has helped any. Unfortunately.
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If I actually wanted to "protect" my Government Minister then I'd highlight that supporting the CBT, GET, positive thinking --- approach poses a risk. Why, because you could end up being labelled the nasty politician/party. Take forcing someone to do GET i.e. under a threat of removing their benefits if they don't "co-operate". Social media highlight that you (the Minister) support this and highlight that more enlightened countries have disowned this approach. Also, the angle the media take is a woman having a normal (successful life) suddenly struck down with a mysterious disease. There aren't many votes in that; women are more likely to vote - so not a group you want to loose - whatever's wrong may not be understood but it is not the individuals fault - so no votes in casting them out.

I'm not sure that I can articulate, or persuade, but I do feel that politically there are risks in supporting flimsy biopsychosocial (BPS) explanations. In the UK the main political parties seem to have come round to the idea that they cannot support this approach.
 
I can’t remember if I asked this before here, but what happens when the guidelines are released? Do GPs get a notification and told they have to read it? What about consultants?

Or is it more of a - I know it’s there but don’t have to read it, will just refer to it when I see a patient who might have ME/CFS? Is there any mandatory training that goes along with it?
 
lunarainbows said:
I can’t remember if I asked this before here, but what happens when the guidelines are released? Do GPs get a notification and told they have to read it? What about consultants?

Or is it more of a - I know it’s there but don’t have to read it, will just refer to it when I see a patient who might have ME/CFS? Is there any mandatory training that goes along with it?
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And what happens to GET proponents if they still deliberately promote it? (Sorry, I'm really not familiar with how this works.)
 
Wyva said:
And what happens to GET proponents if they still deliberately promote it? (Sorry, I'm really not familiar with how this works.)
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I think legally, the GET proponent wouldn’t have anything to back up their actions. We now have so many reports of harm, Workwell, NICE guidelines, the dialogues for neglected illness film. They would lose in a legal fight. I’m sure they will realise that soon enough.

My hope is that after this, someone even puts together a group legal effort on behalf of all ME/CFS patients who have been harmed by GET and even CBT (since what I went through was technically supposed to be only CBT- but was GET through the backdoor, telling me to increase exercise).
 
lunarainbows said:
ME/CFS patients who have been harmed by GET and even CBT
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I am guessing that more ME/CFS patients will be directed to IAPT for treatment (as MUS) and this way will evade any kind of monitoring.

https://www.s4me.info/threads/care-...t-treatment-for-me-patients.2722/#post-321808

I think that something that the ME community in the UK in particular (once the new NICE guidelines are firmly in place) is to push to get some means of reporting harms with regards to any service that ME patients are referred to for treatment be that IAPT, fatigue clinic or whatever.
 
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Wyva said:
And what happens to GET proponents if they still deliberately promote it? (Sorry, I'm really not familiar with how this works.)
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@lunarainbows probably has the professional background to answer this; I'm don't have a medical background.

I assume that if you're in the public sector [National Health Service] then you'd be at risk of being disciplined by your employer and indeed your (medical) professional body - failing to follow official guidelines. If you were reported e.g. to the relevant health committee - health is devolved in Scotland, Wales and Northern Ireland - then the heath trust would have to answer for failing to follow official guidelines.

If your self employed and a claim is made against you then your insurer would have to defend/pay up - the insurance company would then increase your premiums or refuse to insure you - failing to follow official guidelines.

EDIT - Jonathan Edward's post below is much better informed!
 
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lunarainbows said:
I can’t remember if I asked this before here, but what happens when the guidelines are released? Do GPs get a notification and told they have to read it? What about consultants?
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Nobody gets notified in such a way that they are likely to read it. There are far too many guidelines to read regularly. Over a period of time GPs and consultants get exposed to educational material that is supposed to update them but it is fairly optional. Some issues are contentious and everyone gets to know the guideline. others everyone just does what they used to do.

I am not sure if the new guidelines, assuming they are like the draft, will make much difference to GP practice. GPs that refer for CBT are likely to continue and therapists will accept patients on a 'coping' basis. GPs that refer to physios will continue. Physios may be informed enough to recommend something different but it will vary.

The situation for specialists is hard to guess. Of the few that exist those that are already informed will not change much - they already know the issues. Those that like BPS treatments may have to scratch their heads.

I guess that my overall view of this is that not so very much may change in terms of clinical care at least for now. The main change will be in the status of the research as a basis for clinical care - it has been rejected. But physios may come to see that they need to do things differently. Covid may have a big impact on that too. I am not very optimistic that clinical psychologist will believe that the new guidelines are valid. They will carry on in their fantasy world. What might make a difference is if budget holders start restricting use of psychology, but if they had had a motivation to do that they would have done it long ago.
 
@Jonathan Edwards but I would’ve thought a lot has to change - even if GPs only look at it optionally - because the services they’re referring people to will have to change. If the new nice guidelines say CBT is not curative, or get rid of CBT altogether - then local areas won’t / can’t commission that type of CBT or maybe even CBT at all for their clinics can they? I understand they’ll still refer to IAPT and that worries me but if there’s something in the guidelines about making sure any service providers are aware that CBT won’t cure / treat ME and it’s not related to thoughts etc, that should may be enough to dissuade some (even if it had to be done legally). Also they can’t refer to GET anymore.

And physio too - if physical exercise gets taken out (only physical maintenance), it’ll be a very different service.

Also, wouldn’t GPs have to now start offering more home visits etc? And help us access care better (even when referring to hospitals?).

So I would’ve thought there would be huge changes?

And legally surely the guidelines would make a big difference? Like in hospital care for instance. And in places where harm is likely to occur.
 
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