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

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):
At present the diagnosis is one of exclusion of other conditions. There are some tests which are not currently included, which should be considered for inclusion, particularly to reveal a treatable cause. Examples could be Vit D, Lyme serology, EBV markers of persistent infection, B12/folate, Magnesium. Autoimmune screening needs to be carefully considered as false positive tests often result (I would suggest only requested on clinical grounds. The evidence (or lack of it) regarding non-validated tests for factors such as mitochondrial function and ATP levels should be clearly stated.
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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?
 
Woolie said:
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?
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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
 
Woolie said:
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?
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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
BACME would agree that CBT and GET should not be used on the premise of treating ‘faulty cognitions’ or deconditioning as has been written about in many studies. However, it is entirely possible for a treatment to show benefit, or harm, that is mediated through a different mechanism than the one we expected.
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So, the theory was definitely wrong. But the treatment may be right? or wrong? who can tell?!? :emoji_ghost: 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 section in the original paper about unsustainable baselines as a negative aspect of rehab is followed by this sentence: "A recurring theme across reports was the level of exercise being selected by the therapist, and experienced by patients as too difficult." The issue here is that these were not actually baselines, because a baseline should be agreed between the patient and the therapist and should by definition be sustainable. The problem was that the therapists thought that they could set baselines for the patient, not that baselines per se are unsustainable. This is an example of poor quality rehabilitation in some settings, not a problem with baselines as such. We suggest that this section is amended to reflect the complexity of this issue.
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Members are concerned that evidence supporting existing and successful specialist practices that patients report have positively impacted their condition are universally omitted. In our combined extensive clinical experience patients seen in our service have done well in terms of measurable, improved outcomes and data exists to support these claims.
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The data coming out of the clinics has never borne close inspection tho, i'm surprised they're pushing that line.
 
think_that_it_might said:
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
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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!
The use of ME before CFS is a retrograde step suggesting that there is inflammation of the muscles and central nervous system. This is not the case. Changing this name will have significant impact on service’s handouts, resources, signage, name badges etc and will be costly and time-consuming to change.
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...Poor Phil...
…’therapies derived from osteopathy…’ etc This appears to be a direct and personal attack on Phil Parker and is out of place in this guideline
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From a quote in @think_that_it_might post above.

The issue here is that these were not actually baselines, because a baseline should be agreed between the patient and the therapist and should by definition be sustainable.
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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
 
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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...
 
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)
"The committee needs to be honest open and transparent with patients by acknowledging that there is evidence for the efficacy of therapy based on physical activity and exercise, but they have chosen to discount this evidence based on a technicality
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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
 
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