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

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JemPD said:
What AfME quotes? Do you mean the ones from Miller?
My bolding.
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Buchanan is connected to them and adds this:

Patient groups have argued that the use of exercise therapy suggests that those with chronic fatigue syndrome (also known as ME) have no underlying physical problem but are suffering symptoms due to inactivity.

“We have been so widely dismissed and had our suffering at the hands of this condition constantly diminished by the inappropriate and damaging guidance/notion that we can simply exercise or think our way out of a physical illness none of us asked for nor deserve,” said ME patient Glen Buchanan.
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I didn't think that this framing was particularly helpful:

Clare Ogden, head of communications and engagement at UK charity Action for ME, said that Nice’s previous guidelines had been produced with “what Nice believed was the best available evidence at the time but it’s become abundantly clear from patients that their experiences differed from that”.

Nice last issued recommendations on chronic fatigue syndrome in 2007. The new draft guidelines state that it is a complex condition with no one treatment suitable for everyone, “particularly where there is the potential for an intervention to benefit some people but cause harm in others”.
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I wasn't actually thinking of the Miller quote, we've not seen Action for ME explicitly disassociate themselves from Miller (even though they're still in Forward ME!):

“I am aware that there has been controversy over these approaches but there has never been any evidence of harm and they remain the only evidence-based treatment approach in CFS,” said Dr Alastair Miller, deputy medical director at the Joint Royal Colleges of Physicians Training Board and former principal medical adviser for Action for ME.

“It is therefore extremely disappointing that Nice has chosen to exclude them from the updated guidelines and I certainly have concerns that this omission is based more on political pressure than good science.”
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So the Guardian has been able to generate it's usual narrative based entirely on the words of those associated with Action for ME.
 
Posted on behalf of Margaret Williams:

"It is not surprising that Professors Wessely, White, Sharpe and Chalder commented as they did for the Science Media Centre’s press release on the NICE draft guideline.


They are well-known for being either unable or unwilling to face reality by their persistent refusal to accept the proven failure of their PACE trial.


They apparently prefer to delude themselves because otherwise they would have to accept that their careers have been nothing but null and void: as Ioannidis noted 15 years ago: “Of course, investigators working in any field are likely to resist accepting that the whole field in which they have spent their careers is a ‘null field’. However …advances in technology and experimentation may lead eventually to the dismantling of a scientific field” (PLoS Medicine 2005:2:8:e124)


To its credit, by accepting that ME/CFS is a biomedical disorder, NICE has dismantled a scientific field, from which it can be concluded that the Wessely School have spent their careers in a “null field” in relation to their efforts to designate ME/CFS as a behavioural disorder.


Could the refusal of Wessely et al to face reality have anything to do with their long-term close involvement with the medical insurance industry (which must now be quaking in its boots at the prospect of having to accept that if NICE no longer designates ME/CFS as a psychiatric disorder, it can no longer be excluded from cover)?


Margaret Williams

10th November 2020 "
 
rvallee said:
Of course there's this jerk and the usual lies:

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And this is exactly the sort of response we'd expect from the Guardian story:



I don't understand what Action for ME think they're doing by assisting the Guardian put together a story like that. Presenting patient concerns about GET as stemming from a view that it's 'dismissive' to treat a 'physical' health problem with treatments designed to alter thinking and behaviour is not helpful.
 
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Andy said:
I see talk of people and teams experienced in the management of ME but surely, if they have been following the guidelines, they are only experienced in incorrectly managing and 'treating' ME. Where do these people with the correct experience come from? Obviously in the future we hope that they exist but currently?
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A little backtracking and history here-and a pointer that we need to interrogate and understand the processes which result in 'People and Teams' & NICE, if things are to work in our favour......

'NHS People and Teams'
(ie the remaining remnants of the ME Services roll out in 2004)
- (some of which were steady pairs of hands, like Terry Mitchell's clinic in Norfolk& Suffolk and his regional steer in Cambs and Peterborough) -
have essentially been wiped out in the various PCT/CCG's / NICE directed service requirement 2008 - and 2010 shake down of NHS Services by this Tory Government and Landsley 'reforms'.

BACME. and it's insidiousness
Most of the services and staff were/are steered by BACME.
Those remaining services exist in a parlous state, if at all.

Many services are delivered by 'Social Enterprise' arrangements who operate essentially like private medicine care services constrained and exempt from FOI etc making decisions behind closed doors......
GPs and GP Federations likewise.

We now have the perceived reversal of the 2010 Landsley 'reforms' - with the Sustainability and Transformation programmes - and Alliance arrangements which are responsible for contracting and commissioning services.
Very few patient led, patient endorsed service development arrangements/working groups exist, or if they do, they are likely to be are fobbed off or forced into a waiting game (look at Joan's M predicament in NI).
The journey in creating people and teams which can deliver what we want and need is fraught with hurdles and problems, NICE or no NICE!


The current flavour of the month
The current flavour of the month is 'covid services' and some £ dosh available and an imperative.
Likewise IAPT and FND and MUS....... apologies for acronyms.

NICE is guidance and CCGS and Alliances will take it or leave it... if they choose to ...... and many will.

Don't get me wrong- I think the challenge to NICE and the BSP was an imperative and necessary.
We have won the battle but the war is about to begin.

There are very few good clinical leads and precious few doctors will to put their heads above the parapet and chose ME and CFS in their carreer move.

Our Situation
Here in Suffolk the patients' working group is already thinking on it's feet about the need to exert it's influence on the situation currently and to use NICE to our advantage.
We are perhaps more fortunate than others in that we have some willing ears in the Commissioning and Contracts Teams at a senior level to influence the Board, Clinical Exec and the Alliance Strategy and Transformation work.
We have laid some foundations for a proper MDT and service hoping that NICE would be the icing on the cake and justify our stance.

So thank you to patients and other Guideline Committee members who have had to fight the fight on this.......
We will soon know whether all the planning has paid off or if we need to go back to the drawing board for our Service Model in the future.
 
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lunarainbows said:
Sorry, think my point should have been clearer. The reason why I said “normal environmental levels” is that even in situations when noise levels are not “high” or irritating to others, ie just normal conversation in a normally busy corridor, with me in enough proximity to the conversation, is enough to cause deterioration. As JemPD says, it’s hard for others to understand that these apparently “not noisy” situations can be extremely difficult as well, let alone actual (for others) noisy situations.
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I understood - just pointing out that noise in hospitals can be unbearable even for people without ME, or without severe ME. Apologies if I wasn't clear.
 
There's stuff in there that's sounds so good (in terms of adapting how medical care is provided to fit with what patients) it feels like it must be aspirational rather than any sort of commitment. I'm finding it difficult to think through how this guideline will work in practice as it seems to want to change a lot.

Things like this seem so significant:

"Be aware there is no current treatment or cure (non-pharmacological or pharmacological) for ME/CFS."

I don't know much about guidelines for conditions where it's recognised that there is no current treatment or cure. If it's not presented as a 'treatment' then why would patients want the 'care' on offer here? My sense is that often those sorts of conditions do have a more reasonable culture around 'care' for patients, that does give them far more room to do as they think is best for them (including just ignoring all 'care' and getting on with their own lives). Could that sort of culture emerge from BACME run centres?

Interesting to read @Jonathan Edwards thoughts on that, and @Suffolkres talking about how centres are being funded.

It's also difficult to think back to when I was first ill and consider what might have been useful then when I'm now so used to medical 'care' being unhelpful. I suspect this is not helped by my neighbours having building work start today.
 
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Speaking of costs.-in the last NICE Guideline 2007, there was a costing table for patients (linked to the likely patient tariff system) of a typical service cost. I will look it out.
Is there any mention of costing in this guideline? ( I must confess I haven't even read it due to other commitments and deadlines today!) I know our local costs and know historic costs which we tabulated and took to the Strategic Health Authority (remember them....?)
Barts crap service had a tariff of nearly £4,500 whilst Norfolk and Suffolk tariff was under £400!
 
Just had a look at the list of stakeholders. Quite entertaining. I suspect the British Association of Sports Rehabilitators & Trainers and the Faculty of Homeopathy won't be too happy about the draft.
Mysteriously the Ministry of Defence is also on the list. We really must be scaring the establishment :emoji_scream:

More seriously though, I wonder which of those stakeholders will be making submissions, and what sort of arguments are they likely to make?

https://www.nice.org.uk/guidance/gid-ng10091/documents/stakeholder-list-2
 
Esther12 said:
There's stuff in there that's sounds so good (in terms of adapting how medical care is provided to fit with what patients) it feels like it must be aspirational rather than any sort of commitment. I'm finding it difficult to think through how this guideline will work in practice as it seems to want to change a lot.

Things like this seem so significant:

"Be aware there is no current treatment or cure (non-pharmacological or pharmacological) for ME/CFS."

I don't know much about guidelines for conditions where it's recognised that there is no current treatment or cure. If it's not presented as a 'treatment' then why would patients want the 'care' on offer here? My sense is that often those sorts of conditions do have a more reasonable culture around 'care' for patients, that does give them far more room to do as they think is best for them (including just ignoring all 'care' and getting on with their own lives). Could that sort of culture emerge from BACME run centres?

Interesting to read @Jonathan Edwards thoughts on that, and @Suffolkres talking about how centres are being funded.

It's also difficult to think back to when I was first ill and consider what might have been useful then when I'm now so used to medical 'care' being unhelpful. I suspect this is not helped by my neighbours having building work start today.
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As I'm reading through the documents I was thinking - how reality based this can be, how much will remain aspirational? How will it be led and delivered in practice?

The use of the word 'treatment' to me (as a patient) means that it is about improving / impacting on my physical body in some way to aim at cure or medical management of it, e.g. antibiotics for strep throat, insulin daily for diabetes, physiotherapy to recover frozen shoulder.

When the word treatment is used with ME, keeping in mind that there are no biomed treatments for the medical profession to use - this use of the word is problematic. I think it means different things to different people.

I've attended 3 BACME conferences and what struck me was how two cultures were living side by side. The world of Alison Wearden et al in academia (la la land) and the day-to-day world of NHS physios and OTs who had been supporting patients - talking about support and pacing. They pragmatically worked out what they were doing and were able to set aside poor quality research. They will be glad to see the back of GET. They will be I think pleased to see this draft guideline.

I think how this new guideline plays out in NHS clinics will largely depend on the attitude of the leadership in each service. Services need to be medically led - that's my view and I hope it is shared by commissioners - but there will be exceptions. I am reading through to see if there is potential for there to be less of a focus on the medical aspects of ME as a result? That is my fear. Misdiagnosis is rife in primary care - 40-50% (Newton et al 2010; Devasahayam et al., 2012). Medical-led biomed leadership is needed - but does the UK have medics who will take this on - or is there the chance they will feel alienated by this guideline and step back further?

I hope not.
 
John Mac said:
NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance


Link requires a login but I was able to access it with a google search of "chronic fatigue syndrome" and within last 24 hours.

https://www.bmj.com/content/371/bmj.m4356.full.print
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Part of our problem?
Another issue to solve.

Throughout the whole of this BMJ article it reads ‘chronic fatigue syndrome’ (not even a ‘also known as.....’ option) despite the heading from NICE.

NICE Guidelines on
“Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management”

https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/consultation/html-content-2

(Much reading to catch up on!)
 
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Sly Saint said:
conveniently omitting the other earlier patient surveys that showed the same.
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You mean more appropriately talking about the latest evidence? And unsurprisingly talking about something that they were involved in, which she would know the most about? And all of this is assuming that the reporter has published her comments verbatim and in total - I highly doubt that what we see in the article is all Clare said.
 
Daisymay said:
Phil Parker tweeted 6 hours ago:

"nice guidelines change removing GET. It always seemed quite a blunt instrument to me..."

Then posts a link to the Guardian article, completely failing to mention to his readers that NICE also specifically said lighting process not recommended!



I looked at Wessely, Gerada and Sharpe twitter pages and none of them mention the draft guidelines at all.
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Oh bless, looks like Phil has managed to read a bit further and found out the bad news, for him, of LP being advised against - he's now deleted his tweet. :laugh:
 
General comment on guideline as a whole;
good that there is coverage of severe/very severe and children in particular, but as per usual 'moderate'
are barely mentioned, and the general impression is that if a patient is not severe/very severe then they are 'mildly' affected.
 
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