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

[Dx Revision Watch]

We believe that the general effect of this guideline will be to maintain disability, increase the duration of illness, reduce hope of recovery, and lead to decommissioning of existing specialist services...​

The decommissioning of specialist services and re-direction of patients to multi-purpose services like chronic pain clinics or PPS clinics, has been happening irrespective of NICE guidelines. Ironic coming from Barts Health NHS Trust, when PDW has been so keen to see services broadened to be inclusive of patients with other conditions:

and his cronies in the EACLPP MUS Working Group were so concerned about:

 

[Dx Revision Watch]

"...and that Facebook Groups are all ‘very angry’ people."

So they bloody should be.

 

[Simbindi]

Michiel quoted: “Most patients who use specialist services report that online information and ME groups have frightened them and many patients felt that online information from patient groups are ‘all doom and gloom’ and that Facebook Groups are all ‘very angry’ people.”

That's because they're the newly diagnosed, therefore the most naïve and 'trusting of the system' patients. Give them a year or two and they'll progress to being part of the 'doom and gloom' and 'angry' mob!

 

[JemPD]

North Bristol NHS Trust - CFS/ME Service:
Prof Edwards states that “unblinded trials with subjective outcomes are specifically considered unreliable.” If NICE as an organisation were to generalise this opinion across all guidelines for example those for back pain, osteoarthritis and multiple sclerosis, what would the impact of this opinion be on these other guidelines?

Well... perhaps they would all have to start being re-written to make them properly evidence based, as well.

 

[Invisible Woman]

Here's for example what Newcastle upon-Tyne Hospitals NHS Foundation Trust wrote:

“Most patients who use specialist services report that online information and ME groups have frightened them and many patients felt that online information from patient groups are ‘all doom and gloom’ and that Facebook Groups are all ‘very angry’ people.”

Yep. I would have been the same when I first became ill.

Between a medical professional telking me I could get better, if I worked at it & was disciplined and believed vs a patient telling me this wasn't true, I would have avoided the patient and listened to the message I wanted to hear. Especially one given from someone I assumed knew what they were on about.

5-10 years on though and I'll bet the patients who the newbies are being told to avoid are the very ones who've been through that service.

They'd know that if any long term follow ups were done.

More convenient to stick their heads in the sand.

Edit cross posted with @Simbindi

 

[Midnattsol]

Again, these trials cannot be blinded. Respondent bias is recognized in trials, and this is not a reason to dismiss them; and it is possible then to match up those where respondent bias may be a problem, with other measures of functioning or exercise that can be independently assessed.

This sounds very much like using objective outcomes together with subjecti- sorry, "patient reported" ourcomes if trials can't be blinded that a certain someone mentioned in his expert testimony.

But in any case, that won't change that a lot of the studies in the evidence base has no such objective outcomes (or refused to publish the results).

 

[think_that_it_might]

On this last one, it's simple: we wouldn't prescribe a drug if we didn't know the ingredients. Why should LP be any different?

The Register of Lightning Process Practitioners have an answer to that : )

Conflict of interest/Lack of impartiality - Adam Lowe

I admire the way they frequently use the phrase "conflict of interest" to indicate that someone had already investigated their treatment and found it to be rubbish. Presumably the committee should have consisted of people who had no prior opinion on any of these subjects at all

 

[Sly Saint]

lead to decommissioning of existing specialist services

A lot of these are now 'treating' LC patients so they are very unlikely to be decommissioned any time soon.
More likely they now have a problem with having to 'treat' ME/CFS in a more specialised way (which will most likely involve retraining, including 'the experts'),
and the additional problem of LC patients who are being 'treated' with exercise programs who then go on to become ME/CFS patients.

 

[DokaGirl]

I hope eventually, neurologists will see the light. IMO there is proof of neurological involvement if they'd only look for it.

 

[DokaGirl]

From a quote in @think_that_it_might post above.



What about the issue that ME is a fluctuating condition? The word baseline assumes a static, unmoving level & that the patient will always be able to function above that level if they manage their condition.

This is false because regardless of management sometimes the underlying condition itself will worsen for no reason that we can discern yet.

Really simple things like having a really good laugh, getting annoyed and yelling at the TV during a political discussion or football, whatever, can trigger PEM thus reducing that baseline but with a delay factor for some people and a variable recovery rate.

Then there's the environmental stuff and things you have zero control over -
Weather, temperature, humidity, atmospheric pressure
Clocks going forward and back
Hayfever season
Menstrual cycles
Catching a cold or flu
Levels of noise in your neighbourhood
Benefits reviews

Edit spelling

@Invisible Woman you point out a question and idea I have had for a thread: Can You Manage Your ME?

But I have gone off topic. Excellent points, @Invisible Woman

 

[Jonathan Edwards]

Prof Edwards states that “unblinded trials with subjective outcomes are specifically considered unreliable.” If NICE as an organisation were to generalise this opinion across all guidelines for example those for back pain, osteoarthritis and multiple sclerosis, what would the impact of this opinion be on these other guidelines?

Priceless comment. I would like to think that NICE does generalise across these. If not, why not?

 

[Simbindi]

I hope eventually, neurologists will see the light. IMO there is proof of neurological involvement if they'd only look for it.

I suspect that the Association of British Neurologist's comments were written by Jon Stone, or one of his minions/ilk:

https://www.ed.ac.uk/profile/prof-jon-stone

He has a lot to lose if the lid gets lifted on his work on FND.

 

[Mithriel]

I think the criticisms of Jonathan Edwards testimony on the grounds that clinical trials for non drug therapies have to be different, and all that waffle about building therapeutic relationships as part of the treatment blah blah, shows just how right Jonathan Edwards is, and how much there is wrong in a much wider field of psychological and behavioural treatments for all physical conditions, (and probably for psychiatric conditions too, though I don't feel qualified to speak about those).

I think there's a lot of fear coming across that what JE's testimony does is show their so called trials are built on sand, and need a storm like this to blow them over completely.

If psychological trials can only be done with subjective outcomes and they want this to be accepted and results used as evidence, they should be ensuring that everything else about a trial is done to the highest possible standard.

Dave Tuller has spoke drawn attention to problems with the set up of these trials over and over. A quick look at the Virology Blog has lots of examples of trials that are problematic.

If there is any credibility to their results why do the conclusions and abstracts of papers need manipulated?

Once again inconvenient facts are being quietly dropped to deceive the uninformed.

How dare they abuse Jonathon Edwards. A better doctor and scientist than they will ever be and a true champion of patients.

 

[Joel]

North Bristol NHS Trust - CFS/ME Service:
…

Prof Edwards states that “unblinded trials with subjective outcomes are specifically considered unreliable.” If NICE as an organisation were to generalise this opinion across all guidelines for example those for back pain, osteoarthritis and multiple sclerosis, what would the impact of this opinion be on these other guidelines?

Progress?

what did i win?

 

[rvallee]

Those comments are terrifying in revealing medicine's flaws. Medicine truly only seems to make significant progress by way of science and technology, if it were left to medical practice alone barely anything would progress at all. It's PhDs that make things move forward, MDs are holding back not just scientific progress but the most basic recognition of reality.

Because this is an example of how medicine handles things when neither science nor technology can help, and it's complete chaos with the same degree of ignorance as a barnyard shindig, at least as dysfunctional and ignorant as the worst of gutter politics out there. There needs to be profound systemic changes not just to medical practice but to the culture of medicine, one that massively overestimates their scientific literacy and ability to learn from experience. The arrogance is so thick and so out-of-place in all its ignorance.

There's something sobering about seeing the modern equivalent of whiny physicians rejecting the germ theory of disease or foaming at the mouth at the idea of ending the practice of bloodletting. It isn't just that those people would have done this at the time, they are basically doing the exact same thing right now in 2021, just with a slight variation. Because this is in effect a rejection of one of the major consequences of the germ theory of disease, it's the same struggle more than a century later.

And all that is happening with the backdrop of Long Covid, from which not a single lesson was actually learned. It genuinely feels like some sort of religious cult is holding hostage the profession, it looks exactly like it anyway. Truly amazing.

 

[Simbindi]

How dare they abuse Jonathon Edwards. A better doctor and scientist than they will ever be and a true champion of patients.

And one who is willing to learn from listening to patients!

 

[Sarah]

1.1.2 Recognise that people with ME/CFS may have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness

I particularly liked this classic by the RCGP, which could be nominated for entry to the category, 'Most out of touch stakeholder comment on the draft guideline', though there are many worthy contenders.

Can the committee consider adding that those treating and researching this condition may have also experienced prejudice? This will ensure the guidance acknowledges the difficulties clinicians and researchers also face in this field which will need to be addressed in order to ensure that more clinical evidence is generated on this important issue.

 

[Skycloud]

Deleted post - wrong thread sorry!!

 

[Simbindi]

I particularly liked this classic by the RCGP, which could be nominated for entry to the category, 'Most out of touch stakeholder comment on the draft guideline', though there are many worthy contenders.

Now that sounds like something a certain soon to be President of them might have said...

 

[Kitty]

I particularly liked this classic by the RCGP, which could be nominated for entry to the category, 'Most out of touch stakeholder comment on the draft guideline', though there are many worthy contenders.

If they can complain about prejudice when people point out flaws in their protocols and data, I definitely get to complain about racial discrimination because I'm ginger.