NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

[Ash]

They make it sound as if someone's actually made some progress in 'managing' fatigue in other conditions, instead of it being one of the most intractable symptoms faced by patients with a whole list of illnesses. None of them are going to be happy if said 'management' consists mainly of attempts to manipulate them into thinking they don't really have fatigue.

We know ground beneath us. We are subject.

Our living matter. The intervention, secondarily inappropriate.

All life manifest. The intervention primarily, of no utility.

An implement not formed to heal. No giving purpose. Not made to restore or revive any living creature.

Perhaps perhaps practitioner? Some of you will one day come directly to us all to share the interventions appropriateness and utility of purpose, for you and only you specifically and personally?

Or speak for your bodies united administration, gains made through consumption of our present past and future?

As you do when you speak sideways to us. Where no one is witness.

As you do when you tell them what is planned for us. When you do not mind us beneath.

Perhaps practitioners will to share is now full to overflowing. This last incantation so fulsome so loud. Have they arrived?

I live in dread and expectation.

 

[Amw66]

I can see why they are all so keen to keep the treatments they have staked their reputations on to carry on being called experts so they still have status and employment. I expected they would fight for that.

What is baffling me is the number of submissions defending LP. Why should they lay their reputations on the line for an obscure, proprietary pseudoscience? Surely not altruism as it is not something they are known for, so what are they getting out of it?

Someone has skin in the game.

 

[Sean]

What is baffling me is the number of submissions defending LP. Why should they lay their reputations on the line for an obscure, proprietary pseudoscience?

It does seem a bizarre hill to sacrifice credibility and careers on.

So why?

Under extraordinary political pressure to deliver a particular result?
Reflexive circling of the institutional wagons?
Fallen for cult thinking?
Sheer incompetence?

There are not many explanations that work here.

 

[Skycloud]

Perhaps it’s simply that those behind RC endorsement of LP hold an opinion of PwME (sorry, CFS/ME) such that a pseudoscience behavioural psychobabble intervention like LP seems good to them.

Alternatively Phil Parker knows where the bodies are buried. (Eta metaphorically speaking)

 

[Peter T]

I can see why they are all so keen to keep the treatments they have staked their reputations on to carry on being called experts so they still have status and employment. I expected they would fight for that.

What is baffling me is the number of submissions defending LP. Why should they lay their reputations on the line for an obscure, proprietary pseudoscience? Surely not altruism as it is not something they are known for, so what are they getting out of it?

Surely, cognitive dissonance.

Crawley’s study of LP uses exactly the same experimental design as the PACE study and as hundreds of other studies coming up with results they really like. So if you accept this design produces nonsense results supporting a ‘woo woo’ alternative pseudo therapy, you must then question all the other studies using the same methodology. Much easier to support LP than accept it is the reductio ad absurdum of all your other cherished research.

What they don’t seem to realise is that by supporting such an outlying treatment so vigorously they are drawing attention to it and enabling responses like @Brian Hughes ’s excellent blog.

 

[Nightsong]

One of the complaints in the stakeholder consultation responses is that the data extraction occurred at the longest follow-up period available (e.g. 134 weeks rather than the 52-week primary endpoint in PACE). The committee's response to one such comment says that this was "as specified in the protocol for this review". Does anyone know if the analysis protocol is published anywhere? Can't find it on the history page, and I'd like to read it.

 

[Sarah]

One of the complaints in the stakeholder consultation responses is that the data extraction occurred at the longest follow-up period available (e.g. 134 weeks rather than the 52-week primary endpoint in PACE). The committee's response to one such comment says that this was "as specified in the protocol for this review". Does anyone know if the analysis protocol is published anywhere? Can't find it on the history page, and I'd like to read it.

I think Appendix A in Evidence Review H.

 

[NelliePledge]

LP ‘support’ i suspect boils down to us & them mindset. One of them in particular ie Crawley is l8nked to it, criticism of her due to LP connection isn’t reacted to by them ‘reading the paper’ and understanding the criticism. it is unthinking, knee jerk one of us is challenged, we are all being challenged, circle the wagons and back them up. Except when the criticism is valid you look like a bunch of unscientific fools.

 

[rvallee]

It might already be pointed out in following comments, but it goes further than that. They need education on what constitutes as proper science or get out of the branche entirely. Or they already know what and what doesn't constitute proper science and don't care and then they still need to get out.

Honestly I think this argument should be made but this has been very revealing of just how scientifically illiterate most physicians are. This is a serious issue that can't be left hanging, it's clear that ideology plays a major role in medicine, almost a more dominant one than science and it goes far beyond the issue of ME, chronic illness of the many gaps in medical knowledge.

Speaking of which, I am continually annoyed by physicians saying "uh, maybe we don't know everything". Literally not even half-way there, how is this some major revelation? Good grief.

 

[Wonko]

almost?

 

[rvallee]

Perhaps it’s simply that those behind RC endorsement of LP hold an opinion of PwME (sorry, CFS/ME) such that a pseudoscience behavioural psychobabble intervention like LP seems good to them.

Alternatively Phil Parker knows where the bodies are buried.

That's my take on it. They are OK with junk pseudoscience because they believe ME is a junk pseudodisease. They all understand it's quackery, they think it's OK for us, because that's how low they think of us. Nothing mysterious about this, to them it's like a tea party with dolls, don't need to spend too much attention on how long to cook the cake, or whatever.

 

[FMMM1]

@Arnie Pye posted me a link to this*

North Bristol NHS Trust - CFS/ME Service posted this re Professor Jonathan Edwards:
"“Some exercise studies show objective changes in indices of fitness but that does not necessarily imply a reduction in illness or disability”, domains which are typically assessed using subjective measures."
But if they'd bothered to Google then they'd see that actimetry (Fitbit type devices) are better than questionnaires at measuring activity. Saying that somethings "are typically assessed using subjective measures." ignores the fact that Fit bit type devices are common and more objective --- stick to the typical --- we've always done it wrong so stick to it.

The Register of Lightning Process Practitioners comment gave me a laugh ---- I'd recommend reading it Monty Python/surreal?
Jonathan "does admit to being a board director for a ME/CFS patient forum" --- was that extracted under duress - the language suggests it was!
"his [Jonathan's] desire to devalue the statistically significant result of the SMILE RCT by claiming them to be ‘apparent positive results for the Lightning Process"
--- devalue a study called "SMILE RCT" --- does it need to be devalued ---- isn't life too short to even look at it?

The Royal College of Psychiatrists (RCP) don't miss the opportunity to follow the luminaries from North Bristol NHS Trust & "The Register of Lightning Process Practitioners" --- can you even copy and paste that without smiling!
RCP - "“subjective” outcomes (which we prefer to call “patient reported”), contrasting them unfavourably with those that he considered to be “objective”" --- you mean that EDIT - stuff you make up using questionnaires --- filled in by vulnerable people desperately seeking your help?

I think there's a test that you can only be awarded damages if your reputation has been damaged --- sorry to disappoint you but it looks like it's been enhanced @Jonathan Edwards

I have to drag myself away but I may revisit -- there may be more comedy in this*


*https://www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses-4

 

[Simbindi]

I never got past the ABN comments with my detailed reading of comments vs NICE responses, but have moved on to a quick skim read of the comments from some of the main stakeholders.

It does seem that the so called specialist clinics have never seen a severe ME patient and few (if any) moderate patients. The 2007 guidelines must have been a big factor in this skewing of patient referrals, since there were no 'treatments' recommended other than the GET and CBT for 'mild' and 'moderate' patients - although in reality, how many 'moderate' patients would have been able to attend the necessary sessions to complete treatment?.

It's also clear from their feedback that they have no idea of the long term prognosis of ME/CFS or what happens to their patients after they have completed (or gave up on...) their time limited 'treatments' and been discharged back to the GP. So how can any of these clinicians/therapists claim to have meaningful expertise in ME/CFS? That they don't think ME/CFS should be a clinical entity confirms the fact that they are not specialists in our disease at all, and don't seem to want to be!

However, the new guidelines clearly state that ALL of the new guidance applies to severe and very severe patients, even though they have the section for additional information and recommendations for this neglected population. This will put the onus on CCGs to ensure that any specialist ME/CFS service that is commissioned will not be able to exclude the more severe patients from access to clinics, which (despite claims to the contrary) the majority have been doing over the last 14 years (Edit: on the basis that there were no NICE recommended treatments for them).

I can't see how these 'specialist teams' are going to be able to get to grips with the vast gulf between the mild (often non-ME) patients they have been seeing to date and the reality of what moderate, severe and very severe ME/CFS is. From the comments I've been reading, they all think they are 'doing it right' already, not only is there no appetite to learn and change, but instead a deep resistance. I think they wanted to be allowed to go on only seeing the mildest patients, not any that might expose the lack of efficacy and harms of their current approach.

 

[Jonathan Edwards]

"“Some exercise studies show objective changes in indices of fitness but that does not necessarily imply a reduction in illness or disability”, domains which are typically assessed using subjective measures."

I am unclear how this fits in to the critique. I agree that illness and disability are typically assessed using subjective measures but that misses the point. The point is that fitness is NOT a measure of those so objective evidence of fitness does not indicate an improvement in the illness.

 

[Simbindi]

The point is that fitness is NOT a measure of those so objective evidence of fitness does not indicate an improvement in the illness.

I think this will be an important point to bear in mind when evaluating any new management advice from the specialist clinics. From what I have been reading from some of the current booklets, the clinics do believe that improved 'fitness' does indicate an improvement in the illness. Hence the emphasis on 'pacing up', not to improve the patient's quality of life, but to improve the ME itself.

Edit: Thank you for highlighting this difference, it's not something that was obvious to many of us.

 

[ukxmrv]

NICE failed to appreciate the scientific evidence.

Have you seen this review of the Lightning Process by Phil Parker?


There are no harms from GET. Everyone gets tired after exercise.

Ok, there are harms but from an inappropriate delivery of GET. If properly supervised then all is safe.

Nobody does GET anymore.

What do you mean by GET, could you give a definition?
.

Fantastic summary! Thank you. Didn't know whether to laugh or cry.

 

[NelliePledge]

It might already be pointed out in following comments, but it goes further than that. They need education on what constitutes as proper science or get out of the branche entirely. Or they already know what and what doesn't constitute proper science and don't care and then they still need to get out.

The level we imo need to be tackling this at is not at the level of misunderstanding ME/CFS which they willfully or otherwise don't do, but a misunderstanding of science. The stuff they do has wider implications than just us. If we were able to get it through to people that their practices are unscientific as @Jonathan Edwards has been doing, then this should help out us, but have implications far beyond ME patients too. This sort of practice needs rooting out root and stem once and for all.

Oh I agree it’s much bigger but it has to start somewhere and steps that can be taken must be. For example ME association have a budget for sending copies of the Purple book to gp surgeries on request from people with ME and give them out at conferences. I would be expecting this effort to be ramped up. Forward ME should be considering writing to all who have a role in training to publicise the Training module. There needs to be a concerted effort on engaging with NHS on this by the ME organisations.

 

[Chestnut tree]

I never got past the ABN comments with my detailed reading of comments vs NICE responses, but have moved on to a quick skim read of the comments from some of the main stakeholders.

It does seem that the so called specialist clinics have never seen a severe ME patient and few (if any) moderate patients. The 2007 guidelines must have been a big factor in this skewing of patient referrals, since there were no 'treatments' recommended other than the GET and CBT for 'mild' and 'moderate' patients - although in reality, how many 'moderate' patients would have been able to attend the necessary sessions to complete treatment?.

It's also clear from their feedback that they have no idea of the long term prognosis of ME/CFS or what happens to their patients after they have completed (or gave up on...) their time limited 'treatments' and been discharged back to the GP. So how can any of these clinicians/therapists claim to have meaningful expertise in ME/CFS? That they don't think ME/CFS should be a clinical entity confirms the fact that they are not specialists in our disease at all, and don't seem to want to be!

However, the new guidelines clearly state that ALL of the new guidance applies to severe and very severe patients, even though they have the section for additional information and recommendations for this neglected population. This will put the onus on CCGs to ensure that any specialist ME/CFS service that is commissioned will not be able to exclude the more severe patients from access to clinics, which (despite claims to the contrary) the majority have been doing over the last 14 years (Edit: on the basis that there were no NICE recommended treatments for them).

I can't see how these 'specialist teams' are going to be able to get to grips with the vast gulf between the mild (often non-ME) patients they have been seeing to date and the reality of what moderate, severe and very severe ME/CFS is. From the comments I've been reading, they all think they are 'doing it right' already, not only is there no appetite to learn and change, but instead a deep resistance. I think they wanted to be allowed to go on only seeing the mildest patients, not any that might expose the lack of efficacy and harms of their current approach.

Is the knowledge not there or are they willfully ignoring it because they will otherwise loose their position and financial gain?

I honestly cannot understand that medical professionals who have probably seen thousands of ME patients, would not know. Even moderate patients are in dire straits, even mild patient’s lives are severely impacted. They do not want to know.

 

[Simbindi]

Is the knowledge not there or are they willfully ignoring it because they will otherwise loose their position and financial gain?

I honestly cannot understand that medical professionals who have probably seen thousands of ME patients, would not know. Even moderate patients are in dire straits, even mild patient’s lives are severely impacted. They do not want to know.

From memory, I think the Newcastle service [Edit: it was the NHS Newcastle Foundation Trust, not a specific clinic] said they had never seen a single patient harmed by GET/CBT (as per their delivery of it) in the 15 years they have been going! And they state every patient also has PEM, so I have to conclude they cannot be seeing even moderately affected patients.

 

[Trish]

The Newcastle service said they had never seen a single patient harmed by GET in the 15 years it has been going!

I think that's called wilful blindness. Do they provide evidence of following up their patients? A study with data? If not it's a hollow claim.