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

I'm 90% sure they backed LP purely because the guidelines recommended against it.

 

Generally there are very strict rules about NHS employees accepting financial inducements, and presumably most Universities would have similar guidelines. When I was still working we would even inform our line managers about a box of chocolates and then share them amongst the whole work place or staff team. Certainly everything needs to be declared, and even other work or investments needs to be recorded in case of conflicts of interests. I was certainly expected to inform my line managers about any medico legal work I did in my own time.

Having said that work for insurance companies seemed to achieve results in favour of those companies.

Regulations around private patients are different, but I doubt that would cover stock options.

 

I think I was feeling very discouraged yesterday by the consultation comments and the RC’s statements. They do present a daunting edifice and the defence of LP is just so extraordinary and wrong. Today I think it was pointless and probably not wise of me to speculate their motivation. I used far too much energy on it and I really have no idea what they were thinking. I’m interested to know if their motivation becomes clearer but for now I’m just happy that the guideline prohibits LP.

Thank you for making me laugh.

 

I looked again at the RCs statement today and realised that it is more petulant whining than defiant denial. I think certain individuals continued to feel that some sort of stand had to be made but all we are really left with is embarrassingly poor arguments about evidence and a feeble attempt to return to a marketing pitch about rehab and mental health.

What matters is the pressure on service units to dig heels in or to move forward. I actually doubt that this document will have any impact on that. It will reflect continuing attempts by rehab people and the CBT psychologists to keep business but how commissioning goes is likely to depend more on financial factors and local lobbying. Local lobbying for the more progressive approach that BACME seems to take may be very important.

 

I may well be wrong. Although when I wrote I half expected someone to think I meant stock options. PP's LP would have to be publicly traded for that. It was meant to indicate an example of how financial incentive motivates people in favour of something.

But if the NHS rules are as they are then perhaps this was not an issue. My own cynicism cannot rule it out entirely, under the 'rules are for everybody . . .else.

 

Thank you, that’s helpful. I agree completely about the lobbying.

 

I think a lot of them don't follow up, interpret worsening as noncompliance or catastrophising of 'normal setbacks', or just hear what they want to hear. Whenever you improve, that's down to them; whenever you worsen, that's down to you.

 

I've started looking at some of the booklets/advice pages from different ME/CFS services on energy management/pacing, and the one thing they all have in common is their focus on changing 'boom and bust' patterns of behaviour. They all seem to attribute the fluctuation in a patient's fatigue levels to this 'behaviour pattern', rather than seeing it as an an integral part of the illness itself, and they don't even acknowledge all the other symptoms we have. There is no understanding of post-exertional malaise, they all seem to describe its manifestation in patients as an increase in post exertional fatigue only, as is seen in all chronic illnesses (where fatigue is considered generalised fatigue, not the debilitating and multifaceted 'ME fatigue' as defined in the new NICE guidelines).

Any continuing fatigue (they don't even mention other increased symptoms such as pain, tremors, cognitive impairments etc.) is attributed to the patient's behaviour - either they are doing too much and 'booming and busting', or they are doing too little and therefore not 'energising' themselves or building stamina via activity. There is a telling belief that enjoyable activities (either cognitive or physical) produce energy - they clearly haven't grasped that is not the case for PWME. We may produce endorphins that mask our symptoms for a while, or 'run on adrenaline' to complete a task, but there is always a payback for us. But in these information booklets, a PWME's payback is never accepted as PEM arising from some (unexplained) pathology, instead it is attributed to their supposed 'boom and busting' activity cycle.

The bizarre thing is they think cycling between more and less activity levels is an abnormal behaviour pattern, when it is actually what the healthy human body was designed (via evolution) to do. It's one thing to be recommended to try to change this natural behaviour for a time limited period, while convalescing from an acute illness, but telling a person to live in such an abnormal way for years and decades on end would be considered abusive control in a personal relationship (as @Invisible Woman said in a post). There are just so many layers of abuse in the way PWME have been treated, it is like peeling back an onion.

I'm not sure what it will take to change this mindset in the clinics, it appears to be so deeply ingrained. In all their current claims that they 'haven't been doing GET or CBT based on deconditioning' they seem to be missing the point that their whole understanding of ME is wrong and they appear to have been trying to treat a different condition to that specified in the new NICE guidelines (as borne out in so many of their stakeholder comments).

 

Exactly. I have never fit the CFS definition, many of us did not yet they said it was a new name for ME without ever researching what the pathology in ME was. They never checked to see if we were deconditioned either.

So it all started with a fixed belief not any evidence and they still refuse to see anything against that belief, certainly not the patient's reality. For all their demands for evidence there was no evidence for CFS existing as the disease they described and that has not changed.

As an aside, the one thing we can be fairly certain of is that LP is too expensive to be commissioned by the NHS.

 

Unfortunately it does not seem to be too expensive to be paid for by research projects looking at its use in children (unless of course Parker sees this promotional activity as worth it and provides free courses), and papers like Prof Crawley’s irrevocably flawed SMILE trial, not only risk harming the children involved, but result in pressure on parents to try out LP for their desperately unwell children. The outcome being both financial hardship for the family and worsened health for the child with ME.

Hopefully the new guidelines will ensure researchers and health workers are no longer able to encourage families to try LP.

 

I would think they would see it as a bargain c£800 for a 3 day 'cure' and I'm sure PP would offer bulk discounts. I imagine a course of GET /CBT costs much more.

eta: and of course there are no shortage of LP practitioners and if they need more well, it doesn't take long.

 

Well they will if it suits somebody ....

I think Parker provided it free to the NHS trial.

The most offensive thing about them pushing LP for children is that parents will put themselves into debt if they believe it will cure their kids. I have heard of scams for kids with cancer in the US and this is just as criminal.

edit to add bits

 

!!!!

(bolding mine)

If that's how they see it, why the hell spend this sort of time and effort defending the very idea of this stupid tea party? Why can't they just grow up and get a real job?

 

It wouldn't pay so well?

 

More seriously, if you look at the wider implications the BPS have spent time and effort getting into the public consciousness that most diseases are due to lifestyle choices. (Note they carefully don't include arthritis from jogging or lung disease from bad housing or work related consequences to health)

If they are due to bad choices it becomes personal responsibility to get better and they provide the answer in changing your behaviour and exercising. Bad health is not bad luck but due to sin so why should anyone else pay for it?