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

[JemPD]

agree with all you say @livinglighter

 

[Mithriel]

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.

 

[JemPD]

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

 

[Simbindi]

She sent some comments on what I had written, along with a survey on patient outcomes and experiences that the Yorkshire Fatigue Clinic carried out.

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?

 

[Art Vandelay]

The other thing is sleep, all these ruddy clinics seem obsessed with sleep hygiene. IT DOESNT ****** WORK in ME! You can control bed/wake times, screen time, light, not sleeping in the day etc etc all you like, but all it does is make the ME worse.

The more i sleep the better i am able to sleep. Regardless of the time of day.
If i drop off to sleep for an hour during one of my rest periods during the day, i think 'oh good i'll sleep better tonight', and i do. PEM messes with sleep. It for some reason prevents sleep. And no amount of behavioural modification will change that, other than perhaps doing what that particular patient has found helps them sleep.... & bugger the usual 'rules'!

(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".

 

[chrisb]

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?

 

[Art Vandelay]

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.

 

[chrisb]

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

 

[Peter T]

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

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.

 

[Invisible Woman]

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.

 

[lunarainbows]

[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.”]

When we're out of NDA, I'll share what I know within the confines of Chatham House Rules.

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

 

[adambeyoncelowe]

[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.

 

[chrisb]

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.

 

[adambeyoncelowe]

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!

 

[Robert 1973]

The way we made progress in RA was for a group of people prepared to be wrong to sit around in an office firing off dumb ideas at each other and others saying why they were dumb - which meant the answer must be somewhere else. Once we had established that virtually all ideas were dumb we began to see where somewhere else had to be. We are at the dumb ideas stage for ME but it is a crucial part of the process.

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?

 

[Jonathan Edwards]

Have you managed to have any of this type of conversation since you posted this?

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.

 

[bobbler]

yes. I have read several articles/presentations of the dysregulation model over the last few yrs. I'm not up to rereading to find the bits i'm going to refer to sorry.

@Jonathan Edwards and think the points/suggestions you're making sound very sensible & promising, But i am concerned that in the papers i have read, they dont really seem to know what ME is, as opposed to burn out etc. For example in one of the papers they discussed sensory sensitivities as being a nervous system on 'high alert' - sympathetic nervous system activated etc.

But my sensory sensitivities are much BETTER when i am in fight/flight mode - i can tolerate much much more sound & light (for a while - the consequences of having had much much more will be the same -ie bad PEM), but while i'm high on adrenaline i can enjoy my favourite music played pretty loud, but when i'm calm & relaxed, it has to be very low volume & is uncomfortable at best.
And they also seem to think that they are an exposure problem - that we are in silent darkness & then (of course) the light & sound hurts because we're not used to it. And therefore gradually exposing to a little more each time will 're-regulate'.... but it doesnt work like that. The reality is that when well rested i can enjoy listening to music/ a busy environment like a shop etc, or sitting in the sunshine, but as i begin to tire (after 5-15 mins depending on how demanding the situation is physically (sitting down or reclining/standing up) & how much sensory input there is.... then the sound/light begins to hurt more & more until it is physical torture, not just to eyes/ears but to whole body.... ie the more the exposure the worse it is, not the other way around.

And the inclusion of people who find loud noise/bright light distressing because they have depression/anxiety issues (ie its distressing at the time but has little ongoing impact) in the cohort, just muddies the waters.

The other thing is sleep, all these ruddy clinics seem obsessed with sleep hygiene. IT DOESNT ****** WORK in ME! You can control bed/wake times, screen time, light, not sleeping in the day etc etc all you like, but all it does is make the ME worse.

The more i sleep the better i am able to sleep. Regardless of the time of day.
If i drop off to sleep for an hour during one of my rest periods during the day, i think 'oh good i'll sleep better tonight', and i do. PEM messes with sleep. It for some reason prevents sleep. And no amount of behavioural modification will change that, other than perhaps doing what that particular patient has found helps them sleep.... & bugger the usual 'rules'!

But of course it all works nicely in those people who have CF for some other reason such as burn out/stress, poor diet/sleep hygiene etc alone.

So if we are going with the Dysregulation model, we have to find a way to make it really explicit to all concerned, that this isnt just the usual dysregulation that can be altered by behavioural means, and if the patient says 'hmm that isnt the case/doesnt work for me'.... THEY MUST BE BELIEVED and the professional see that as a thing for curiosity, rather than the current assumption that the patient doesnt want it to work or cant be arsed to do it.

The system is dysregulated in a weird/unknown way, so the usual methods for re-regulation (like sleep hygiene) wont work as well as usual, or at all.... Surely it might be that from those usual methods not working, answers might be found, certainly i'd have thought at least subgroups might be found. ie why dont they work? What isnt responding? Why isnt it responding?

Which i think may be something like what you're suggesting Jonathan?

But its critical, that if you're going to start talking about the DysR Model, than please include the words 'physiological', and something like ''& for which the standard rehab/behavioural reregulation methods fail."

This

 

[bobbler]

So if we are talking about “what’s going on with ME”, and throwing some ideas into a mixing pot, here are a few of mine: (There have been a few more posts as I was typing…. )

1. Adrenalin:

I can perform much better under adrenalin’s influence. As a biologist I recognise it as the “flight or fight” hormone. So basically it is about survival in the moment. Blood is diverted away from the gut, and towards the brain and muscles ready for action. Pain signals are also down-played, so the body is able to respond with less inhibition.

I won’t deny, I love a little adrenalin in my system.

However, as an ME patient, I find that once in my system, adrenalin leaves rather more slowly than I’d like.

A friend and I coined the phrase “dangerously okay” to describe the period when adrenalin fools you into believing you are better than you really are. This phase lingers even after an activity has drained the muscles of their energy. I KNOW I should be laying low, but I find it really difficult to appropriately rest in this state. It seems I don’t get PEM until after this phase passes.

2. Gut:

I have found I do active things better on an empty stomach. This may be because “doing stuff” involves adrenalin which diverts blood away from the gut, so of course it’s better if there isn’t a load of food in there. I regularly skip breakfast, and always on the days I’m going out to work my dogs.

3. Compression Wear:

So it seems if I want to do something a bit more active (eg my dog agility rounds which involve about 40 - 50 seconds of high concentration and co-ordination of my muscles - I’m just walking but none-the-less this is “active” effort). Lower body compression wear helps keep me on my feet for this, and means my brain able to keep thinking. This suggests to me that my peripheral blood vessels don’t respond correctly when I up my effort levels, because without compression wear, I quickly feel un-coordinated and sort of drunk (without the happy part).

4. PEM:

PEM feels like an immune reaction to something. This seems to tie in with its delayed response (48+ hrs after the event for me) and with PEM’s incapacitation. ‘Flu leaves you feeling sore all over, sensitive to light, sensitive to noise, without an appetite, and unable to get-up and go-on. As I understand it, these symptoms are down to the immune system fighting whatever virus is causing the ‘flu. PEM for me feels like this too. Whereas in the 24 hours after activity, I can feel like I’ve escaped the PEM reaction (no doubt the adrenalin), the “day after, the day after” brings home the truth.

5. If PEM is an immune response, to what is the immune response directed?

So here I’m feeling about in the dark.

A) Might it be that the gut gets “leaky” and our immune system fights some of those larger molecules that slip into the blood stream? This might connect with my observation that I “do better” on an empty stomach. Maybe if there’s less in the gut, then less leaks out of it? Who knows.

B) Might it be that the poor response of the peripheral blood vessels causes “something” to get flushed from the tissues to the lymphatic system, where an immune response is initiated to that particular molecule?

C) Might the fact that my muscles are highly fatiguable and the consequent anaerobic respiratory processes mean some weird respiratory by-product is produced at levels that sets off an immune response??? (Not sure on this one…).

D) Maybe the lack of production of ATP (cos anaerobic respiration can’t keep up) and the eventual conversion of ADP to AMP, could not only leave use drained of physical energy but also lead to other metabolic pathways that delay our ability to recover appropriately?

6. Energy Ceiling?

None of these things seem to account for the fact that each ME individual has an energy ceiling effect.

What factor accounts for its level? Why is it relatively consistent over time? Why does it occasionally change for the better or worse? If over exertion causes it to drop what is the mechanism for that drop? If an antiretroviral drug causes it to lift (as happened for me during 2016) why is that? What was the mechanism for the change?

What is it that sets the level for each person’s energy ceiling? What can we do to nudge the ceiling up again?

All we know now is that normal rehabilitation involving exercise is counter-productive. Why is that?

It also seems that rest, although essential for maintaining a current energy threshold, doesn’t necessarily help the threshold to re-adjust upwards. Though a waiting game of rest, may eventually mean that some natural change happens to restore a better energy level…. Or of course, it may not!

7. Boom and Bust ?

So here’s the thing, NO-ONE ever does the same amount each day! Not one person! We all go through cycles of doing a bit more, and then doing a bit less.

So if I choose to rest today and tomorrow, so I can do something a bit special the next day, and fully plan in my rest and recovery for the few days afterwards, then why should I not do that?

I have been doing exactly this for the past six years. In truth I have found it much more difficult to come back after a period of several days doing “just a tiny bit extra” than from a single day of “quite a bit extra”.

Understanding how these activity patterns work would also be useful, but I can’t seem to suggest a mechanism right now. It “feels” like there is something critical that gets depleted, and I just need to wait (and rest) until is gets restored.

****

Ooops… long post dumping a whole load of thoughts… hope it’s not too off topic. But maybe as the first of a load of “dumb ideas” it might make someone more knowledgeable than me think “Ah ha!”….

This

 

[Robert 1973]

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.

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.

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

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