Snippets from White P et al. "Eight major errors in the review process and interpretation of the evidence in the NICE guideline [...]" [for ME/CFS]

PEM which appears the same as what is called boom and bust in brain injury is categorised as fatigue based even though it includes other symptoms including latent neuropathological pain flare ups.

 

As I read it their complaint about the so-called new definition of ME is based on the inclusion of PEM as a core feature.

IMO it's semantic quibbling whether the NICE definition is technically new - true in a sense - or just an operationalisation of IOM - also true. There is a more important point the letter writers appear to be trying to detract attention away from.

PEM isn't new. A form of the phenomenon has been recognised since Ramsay at least and it has been a core diagnostic feature for two decades, since CCC. Yes, NICE may have minimally fine-tuned the definition of ME. But it was some of the letter writers themselves who attempted to significantly redefine ME (CFS) by making up their own criteria - without required PEM - and/or by insisting on using outdated criteria - also without required PEM - because not requiring PEM suited their own purposes.

Even if NICE had developed a new definition of ME, which they haven't, what would be the problem with that? Disease definitions are constantly refined as new evidence comes to hand and this often results in old studies becoming less relevant. Which is as it should be. Yes, you do need solid new evidence to justify making significant changes and in the event NICE stuck to the status quo - CCC, ICC, IOM - of requiring PEM precisely because there hasn't been any new evidence suggesting PEM is not a core feature of ME after all. Nor was there any such evidence against PEM as a core feature back when some of the letter authors themselves tried to define ME (CFS) as basically psychosomatic fatigue for their own purposes.

So it looks like they're (wrongly) accusing NICE of doing the very thing they did themselves.

 

This is one of the main infuriating things for me... THEY are the ones who redefined ME, as a "fatigue" condition, & whitewashed PEM out of the equation (a la Oxford criteria). And they they start squealing when their redefinition is reversed so we can get back to a definition describing the original ME.

Same as moaning about the long term/vs short term outcome measures, moaning that only LT measures were used, when in the Depression GL they moaned because they werent used!
And complaining about the lack of trial evidence for activity management, when they were very happy to make recommendations without evidence in the previous GL

 

I can see how this might be written by someone who is a genuinely good health professional who offers biomedical support ie saying that the strategy is for them to stay within their limit, but also offering actual medical care and any letters relating to adjustments and functional needs.

Such medical care would involve if someone is going up or down and understanding the illness enough to be someone that the PwME can actually discuss what they think might have caused that e.g. it might be their situation, consciously overdoing it because they don't have the support or environment with noise or bed or other issues affecing their ability to get good rest.

Or not one of these and other medically-related issues needing testing for, looking into - which sadly because of old guideline many people won't have had checked on principle of once they got chucked in the bucket (whether much was actually ruled out before or not) then sudden exhaustion which might result in e.g. iron or diabetes checks or other flags for diseases

I think that given the state of healthcare, particularly to those with PwME this is ambiguous enough those good mightn't have the ingenuity to realise they need to imagine this is 'the norm' as per others of 'just take it seriously' (because if notes build up enough, and habits are laid of 'it must be x' then people need to be reminded its an illness and people just like any other person). But also to reassure them that the old guidelines where they inferred 'by taking a patient seriously you are reinforcing some anxiety or hypochondria' was wrong, but also existed, so these people might be playing catch-up on basic care, and more ill to begin with (so lots could actually be done that might make a seemingly small difference that is a big difference as 10% function can be tranformative between coping and not).

I also think it needs emphasising that access to much needed adjustments that mean 'ends meet' on all sorts of daily tasks needs 'getting ahead of' with this condition, ie it's a condition where instead of waiting until you can't ever (and thinking the old fallacy of 'use it or lose it'), you need to think 'envelope' and how if that is pushed then it shrinks further, making for a problem where adjustments can't touch the sides. If only people realised that it is long term, and that helping those with moderate/mild to have a life that 'adds up' and allows them to look after themselves with support, stops them becoming severe...... which is much harder to help the attitude you'd hope would be rather different.

It is critical. In this case people need to begin summarising this short-term subjective and coerced by wording of questions-to-priming during 'treatment' results of PEM as basically 'denial'. That's what they are selling. Except it is a crueller version where everyone around you is in on a dystopian Truman Show where behaviour psychology style punishment and being shunned for doing anything else creates a huge relief from that abuse short-term and then a tightrope medium term (admitting you are ill = bad treatment by most around you, not = body falling apart and becomes unsustainable as the excuses wear thin)

It works really well in the early days of a not too bad cancer diagnosis to feel better to ignore it and not face up to reality and just keep going as normal. That's without it being encouraged as a good idea by those around you and training to tell you any worsening symptom you feel is just being wimpy about getting fitter and shouldn't be mentioned as anything other than 'a good sign' (hurt doesn't = harm line) which is only revealed as a total lie when people get less fit and never get fitter for long enough they've realised they must have actually been lied to by medical professionals.

And then, often because of this lack of leeway we can list lots of historical short-term things people might grasp for medically or non-medically to get through 'fatigue' (even just laypersons): eat lots of sugar works short-term but stops being useful medium-term, steroids and stimulants in ME/CFS were found to be an issue because we need our rest as well as 'getting past the slump' and so on. And this is where the fatigue red herring is an issue and does need to be unbundled - many of those ill a long time and more severe than they need to became very talented at 'performing despite' and mimicking someone on 100% health when they had e.g.40% by necking coffee and setting 25 alarms then going to bed as soon as they got home from work - it does the opposite of 'managing or curing ME' but short-medium term 'tackles fatigue' whilst robbing your future.

 

Having only just caught up with this, it seems very much like demanding a retrial to properly take into account the evidence you still don't have. There doesn't seem anything substantially new that wasn't covered when the new NICE guidelines were created.

 

They promised pushback and I feel like they are trying to reassert their position and convince the fields the journal is for that NICE got it wrong and therefore to continue as usual because they don’t have to follow the guideline.

 

I'm sure they are trying to push back, I'm just really not sure how effective it will be. My feeling is it will be harder for them now, as they did get to present their lack of evidence to NICE, but I'll happily admit I don't have a deep knowledge of that world.

 

It is not "boom and bust" at all, even though that is what the psyches keep insisting (they distort terms all the time so it may be used differently by brain injury specialists) so it is our fault for becoming deconditioned but our fault if we get worse with their GET because we have been stupid enough to do too much.

The thing about PEM is it happens even when you have done something you have been doing without payback for years.

Fatigue hits immediately after you have done what tires you. In MS, RA and so on doing too much can exacerbate symptoms but they never do something they have always managed, feel fine for 3 days then collapse. While in PEM someone can become fatigued very easily but that is different.

Since White and friends have been the "authorities" on CFS they have not been talking about anything even close to the disease I have had for over 50 years. Finally the Guidelines might do something to help me.

 

When you look up neurological "boom and bust" it also refers to the delayed onset of symptoms, prolonged recovery, pain and lower activity levels, it's different from the psyche "boom and bust". I don't know why they've decided to call it the same thing.

 

They use standard terms but give them a different meaning to make it seem like we are complaining about nothing. When the PACE trial was questioned they said that by "recovery" they meant "recovery from that particular episode" despite the usual meaning of recovery being no longer ill and their usage being called remission.

Patients were mocked for not accepting CBT when those with other illnesses had no problem with it, carefully omitting that CBT is used as a way to come to terms with the likes of cancer or heart disease and not the only treatment, presented as a cure.

Functional as in FND has this double meaning. Doctors use it to mean how a system works, that is "functions" in the same way we use it in everyday life, but in psychology it has a specific meaning of "symptoms which serve a useful function by expressing emotional distress". This hides the pseudoscience of their theories.

As for fatigue, they insist it covers all the long catalogue of symptoms we have yet, in practice, and to the public and medical profession it is heard as "a bit tired".

"Boom and bust" is a terrible expression as it implies the reckless behaviour of someone who is not disciplined and has only themselves to blame if they feel bad. It may have a specific medical meaning but when you are fighting public perception it is unfair for professionals to use ambiguous terms.

 

Seeing as they are, once again, publishing their own editorial, about their own paper, in their own journal, joined by other people who do the same:

https://twitter.com/user/status/1615037276513239055


Will it pass peer/buddy review? The suspense is so thick you could cut it and sell it. Will Theranos' extensive secret testing show the machines work? Who knows?!

 

Too right. It is a term I assume come up with to be deliberately misleading (another one, along with the devious 'relapse' for 'getting worse/deteriorating having never recovered from rolling PEM'). Because ME/CFS is like the cliche of 'moving through treacle' when you aren't at one of the few short times in your life when you are free as a bird and can follow your body, it is just accumulating sludge with the added quicksand effect of if, for whatever reason (often done to us by sensory or others 'showing us we can do it you know we just needed to try'), we do that one thing too much or too long or on top of a day already 'used up' it causes illness. that measn you don't wake up are ill and who knows when you actually recover from that because you normally have to start moving way before that point might ever come.

It is like having something more serious and debilitating than flu and the moment you aren't getting worse having to go back to your normal active lifestyle and knowing not only is it a struggle but you are slowly getting worse and never get that break to recover like you told yourself you would 'that weekend' as an excuse to why you went back to work too early. It's your body just not rejuvenating.

The only thing I can imagine they describe this as is for unempathetic people who treat others like objects like judge without any care for what's going on outside the little slice they see. And how that day someone said 'I'll push through to finish this now' without realising that person knew they 'were blown' already and would be ill for the foreseeable so has to make judgements regularly where whatever important thing gets finished before you are in bed for a long time and there will never be enough health to pick that up again to finish it. Our lives would be like those homes of people who tend to start decorating projects in every room before finishing another one, and you visit for years to see the same half-stripped walls taunting them and stopping them from enjoying most of their home.

And yes I can't resist saying that is because of the misinformation they've spread leading directly to a 'hostile environment' for our body-needs. So what they are really describing is merely an artefact of a situation they've perpetuated.

More accurate is sludgy days interspersed with what people think are 'gets really ill with flu or tonsilitis every time they go out or have a busy week' or whatever, or just collapsing in bed for many days at least following whatever smallish thing, or with rolling PEM as it is - accumulating as you struggle through and having to take inordinate time off just to recover to fake-functioning level to start it again.

If they'd listened when people mentioned 'never recovered from virus' rather than PR'd that whole thing as ridiculous (tey haven't proven not and as a descriptor who cares if etiology is specific to that) everyone would get it - they've nearly had at someone point that 'cold they can't shake or get back to full strength after' one year or just being stuck well off normal and something obviously wrong. And I suspect that is what most who went to the GP before all of that misinfo would have used as a heuristic for all of the above - and it be understood because it was 'common frame of reference' before all the 'you don't stay ill after a virus' obsessive PR this bunch spent the last few decades making a career of. It takes special people to make whole nations unlearn real knowledge and empathy everyone 'just gets' because that's the observation and what it looks like.

 

Does anyone know if this article was ever published anywhere? I haven't been able to find it.

 

I suspect it's still in peer review.

 

Hopefully the peer reviewers will be aware of some of the responses to this article so far and be asking searching questions. That is unless they are, as is very possible, co members of the BPS cabal.

 

Thanks.

I ask because Debra Buchwald, one of the authors of this letter, is presenting "Lessons Learned from Chronic Fatigue Syndrome (CFS)" at an NIH sponsored scientific workshop on post-dialysis fatigue. She'll discuss challenges to moving the field forward medically, strategies used to overcome these and strategies to move the field forward.

 

Replying to someone else about Buchwald but relevant here.

 

Yes, agree she is more than a bit BPS