[Blog] BACME, NHS ME/CFS clinics shift from deconditioning to dysregulation model of ME/CFS in anticipation of updated NICE Guideline

agree with all you say @livinglighter

 

The main message from this long interesting thread is that we need researchers and medical professionals who really know what happens when a person has ME. The description that they have been taught is barely recognisable to most of us and few of them have any insight at all so how can they treat us or know where to look for answers?

On another thread there was a description of ME in the introduction of a research paper where they said that it is characterised by severe fatigue which prevents daily activities. This is completely wrong. When you have ME normal daily activities cause fatigue and a whole host of other symptoms.

We desperately need researchers who know what is going wrong so they can find the cause. It will not be easy as many of them are very subtle, one reason why it was so easy to write them off as psychological, but accept them as a physical consequence of a disease process and we may get somewhere.

When Wessely and co started taking over they were described as "lumpers" as opposed to "splitters". They took lots of patients and looked for the symptom they had in common, fatigue, and then spent their efforts trying to cure that. This thirty year experiment has not yielded any benefit for us so now it is time for change.

The rest of the symptoms in ME, long ignored, hold the key.

 

Well Amen to that! could not agree more

 

Did this survey clearly differentiate between those patients who met a strict ME diagnostic criteria with PEM and other symptoms, and those who met only a much looser criteria or had idiopathic fatigue? Also, many patients who are referred to these fatigue clinics are likely to have a time-limited PVFS, so drawing conclusions about what is going on in ME from the 'outcomes' of patients who are seen in the current ME/CFS clinics is going to be problematic at the very least. Not only do these clinics offer little or no help to severe ME patients they also do not see or monitor long term sufferers, so how much do they even understand about how the illness progresses?

Also, given the clinic offers a kind of 'screening' course for patients to decide if the approach 'suits them', did the survey include those patients who decided not to take up the offer of any treatment and their reasons for declining or dropping out early?

 

(please move or delete if this is too far off topic.)

I am the same. None of the advice I've been given about sleep works for me. PEM results in nasty insomnia that is impervious to anything I throw at it.

Moreover, I've found that I cannot normalise or adjust my sleep schedule no matter what I do (this doesn't stop doctors continuing to advise it). My body will only sleep between about 3am and 12noon.

I have always noticed that I sleep very badly in summer and had blamed that on the higher temperatures. However, spring has been very cool here this year yet I am still sleeping as badly as I do every summer.

What seems to be causing the problem is the change to daylight savings time. I try to keep the same schedule with daylight savings (eg, 3am to 12noon on daylight savings time). I'm finding that I'm now falling asleep at 4am (daylight savings time) yet still trying to get up at 12noon (DST). The result is that I'm losing sleep every night.

My body doesn't even want to eat at the daylight savings mealtimes. It gets hungry at the usual times.

If I can't even adapt to a one hour change in sleep schedule over a 4-5 month period, what hope do I have of changing to a completely 'normal' schedule?

Of course, in response to this, the doctors say "you just don't want to get better".

 

They probably think it is "volitional or simulated" insomnia.

Seriously though, have they actually said that to you, or is this their presumed attitude?

 

Do you mean have they ever said "you just don't want to get better"?

Yes, they have. They say that ME is all "behavioural".

The attitude here is that symptoms are "all in your head" or patients are making themselves sick through their behaviours or are catastrophising over very minor symptoms. They will often use all three explanations in the one appointment.

 

I suppose it is to be expected. Australia was, after all, the scene of the 1st International Conference on Illness Behaviour in 1984. A suitable year.

I thought it was only a trainee therapist reported in the Weardon, Chew-Graham paper who actually said that

 

I always puzzle that just a one hour change can feel like significant jet lag. However, my social interaction is fairly limited, such that, though I alter my clocks, in relation to sleeping, eating, etc I can now just ignore the time changes.

 

Yep, the clock changes really mess me up too.

I also suspect that changing light levels have an effect so when daylight hours & strength of light (? not sure that's the right term) either increase or decrease beyond a certain point that messes me up - that could be related to migraines though.

Sleep hygiene and "fighting" it just make matters worse. If I go with it as much as possible things will settle down quicker.

 

[in response to @Jonathan Edwards “
Jonathan Edwards said: ↑
The same. She resigned, but after signing up to the revised guidelines. Why she resigned nobody seems to know.”]

@adambeyoncelowe could you share with us some more details on this now that you’re out of NDA?

 

Here's what I know: the three resigners had all signed off on the GL in meetings. The reasons for resigning were varied and I think external pressures were a bigger factor than anything else. Everyone on the committee got on and there weren't really any big fallings out.

 

I wonder whether you would comment on the BMJ article of 3 August to which all I can do is link to@Adam pwme 's post
https://www.s4me.info/threads/nice-...-10th-november-2020.17687/page-43#post-360160
which led to the earliest awareness of the difficulties ahead. This was clearly a planted story.

Paul Garner was quoted as indicating that major disagreements led to the resignations. The RCPsych was all ready to go with its letter of rejection of the guidelines on 6 August, despite claiming to have only received them on the previous day.

 

I'll have a look at what it requires and what I can write. Thank you!

 

I’m very late to this conversation but I think this is exactly what we need with ME/CFS. Have you managed to have any of this type of conversation since you posted this? If not, how do we set about getting the right people into a room to have these conversations — preferably on a regular basis?

 

Not in exactly the same systematic way with a group of a dozen people but yes, the process has been going full tilt in a slightly formats. The S4ME threads are often this type of conversation. Recent threads around @ME/CFS Skeptic's blogs come to mind, where everyone has picked apart ideas and found they do not quite work. In addition, Jo Cambridge and I have been doing this for ME/CFS just the two of us for ten years now, using. our old formula. We have n't got very far in terms of new models but I think that is simply because of the lack of leads. We have gone a long way in terms of feeling comfortable with discarding popular theories, although it was always the case that every theory is always worth re-visiting after a while to see whether one has come around in a circle and realised that it was discarded prematurely. Jo and I have seen less of each other since she was unwell and Covid was always a threat but she has been much better recently.

In relation to BACME I realise that my position has shifted, but that has been said on other threads.

 

This

 

This

 

Good thing know that Jo is much better.

Is there anyone else you could invite to brainstorm with you and Jo? People from inside or outside the ME/CFS bubble?

I’ve always felt that we need more of the right minds trying to solve this problem, but one of the problems seems to be that not enough of the right minds even understand the problem. If more did, I think there would be much more interest in trying to solve it. Aside from the desperate need to relieve the suffering, to me it is a fascinating intellectual problem.

The right minds belong to those who change their positions in response to evidence or valid arguments.