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

yeah, it's ok, i found that after having a poke around : )

 

I skipped the neurologists, but BACME saying mentioning severe ME early on "devalidated their (patients with moderate ME/CFS) experience of the illness", really?!? their comments are looking like a very mixed bag (this is perhaps unsurprising)

 

I'm fascinated by this comment by Royal United Hospitals Bath NHS Foundation Trust (https://www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses-2, page 292):

Could these "false positive results" indicate that immune disturbances (those which don't meet the threshold for a formal autoimmune diagnosis) are more common than we think?

 

It's probably a reference to an ANA test, which can have a pretty high false positive rate: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Antinuclear-Antibodies-ANA

 

This area is very complicated but basically these are not 'false positive' results. A positive ANA is a real biological phenomenon, unless your lab is below standard. What is meant is that a positive ANA does not necessarily indicate lupus because a proportion of healthy people have positive ANA. But then a proportion of those go on to have lupus and other things.

Autoantibody tests are only a problem if they are interpreted by people who don't understand diagnostic processes. Sadly, quite a high proportion of medics fall into that category. But having diagnosis of 'possible lupus' does less harm than failing to identify lupus by deliberately not doing an ANA.

 

Back at the comments grindstone. BACME's comments feature some occasionally reasonable suggestions, but this is largely punctuating a lot of arse covering about the specialist services. This is a curious line

So, the theory was definitely wrong. But the treatment may be right? or wrong? who can tell?!? Lots of waffle and handwringing that their testimony hasn't been taken at face value (or: above that of patients)

 

assumptions from BACME that baselines must always exist, also missing the point that these presumably were set by their members and, as such, one would expect a bit more humility on the subject

 

The data coming out of the clinics has never borne close inspection tho, i'm surprised they're pushing that line.

 

My feeling has always been: if you've known people are doing these treatments wrong for over 20 years, why haven't you done anything about it, and why would we trust you to do anything about it within the next 20 years?

The onus is on clinicians to prove that they have cleaned up their act and put safeguards in place before asking for something to be included in the recs.

I'd also put this to the RCs: put your money where your mouth is and fund an independent Yellow Card scheme for non-pharma treatments. If you're so convinced you're doing it right, build up the evidence base to prove it.

They won't, though, because they're too scared of the results.

 

Some full yikes content from the CFS/ME Service for South Yorkshire and North Derbyshire – Children and Young People’s Team, this is what i'm here for. Will someone think of the sign writers!

...Poor Phil...

 

Chartered Society of Physiotherapy strongly pushing GET on the basis of GETSET, oh dear...
(edit) i tell a lie, it's "guided graded exercise self help intervention", silly me

 

LOL at CSPs suggested guidelines, which claim that the previous programme (what I assume to be GET) "seems to have been significantly misunderstood", presumably because they've decided to change the definition of it after the trials without telling anyone

 

considerable upset that these guideline have been written for the benefit of patients rather than the chartered society of physiotherapists

 

Wahay!

 

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

 

Lotta mindfulness here, Qigong too.

I have more sympathy than some will have for herbal medicine, but if i truly expected the NHS to consider it as a front line, paid for treatment i would be very foolish.

No mention of actual homeopathy yet, the ghost of George Lewith grows impatient...

 

Full credit to the Institute of Osteopathy for all their comments basically being 'won't someone think of the poor underemployed osteopaths?"

 

Was waiting for this to be phrased in this way, from the extremely exercised Newcastle upon-Tyne Hospitals NHS Foundation Trust (who is behind this? they go on at great length)

that being that they don't work #Technical.

I am actually very surprised they went with this in the comments, this is fine for a press release to fool someone not familiar with the field, to think that NICE weren't going to respond with three pages of comments as to why they were wrong is just petulance

 

tldr: they aren't happy
This is an understatement, they go on forever, lots of 'why is this person here, that guy hates us...'

 

LOL, the LP guy is upset about "unsubstantiated opinions instead of evidence"