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

[Mithriel]

That makes a lot of sense. I was thinking of the phenomenon of 'second wind' where agonising exhaustion at 8,000 metres in a 10,000 metre race can suddenly be replaced by a rhythm that will get you to the finishing line and even with a reasonable placing.

I think ME must have something to do with some down-forcing signal operating for no reason. It reminds me of our gas boiler that would fire up nicely when we open up house but switch off half an hour later, then fire then switch off ten minutes later and then keep switching off until it stayed off. It turned out to be an oversensitive water sensor. Now the house heats fine.

In terms of disease there might be a comparison with nephrotic syndrome where the liver actively reduces the plasma protein level, aggravating oedema already present due to capillary leakage. If you fill the plasma up with protein the liver just degrades it until the level is low again.

When the adrenaline has kicked in, do you the find your energy ceiling seems to have in increased? Or does it still hit you at the same point? Just wondering if this would give any hints as to whether it is the energy availability to cells itself that is ultimately awry, or if is the perception of energy ceiling that is changing.

I am not sure if it is adrenalin or not, surely something that could be tested. It happens to me when I am having fun as well as during a crisis. It also happens when I am being seen by a doctor so they never see what my life is really like.

What it feels like is dipping into your savings to pay the rent. Everything is fine for a while but the damage is still being done underneath. It is not a healthy body that is being told it is sick or a reset because the brain has got the level wrong it is a sick body that is being overclocked so there is a temporary improvement that has to be paid for later.

I have spoken before about getting fitter over a month in 1990 and feeling so good I believed I was well on the way to being cured. Then my legs stopped working one day and I have only managed a few steps since and use a wheelchair.

My body has a disease which causes damage whether I know it is happening or not.

 

[voner]

wouldn't a dysregulation have to occur in a location or system that would cause downstream effects that reflect the heterogeneous nature of the symptoms of ME? if so, where/what etc…?

 

[Kitty]

Im confused, does laughing activate your fight/flight response then?

Being in stimulating company makes me completely over-stimulated, and filled with adrenaline to the extent that my hands go shaky.

I'm autistic, though, I don't know whether that has anything to do with it? Laughing at a funny book or TV programme when I'm on my own doesn't have the same effect.

 

[ArtStu]

Dopamine works wonders for me. Mostly in the expectation of pleasure senario.

 

[FMMM1]

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.

Reminds me of Karl Morten's description of working with Cara Tomas - she didn't eat during the day as this gave her more energy.

 

[Dx Revision Watch]

Definitely nothing to do with any criticisms of the PACE trial

Also, when did she stop being the Chair of BACME? Presumably this role was relevant to her selection to the NICE GDC at the time it was formed?

According to MEpedia:

Murphy was appointed to the NICE guidelines review committee for ME/CFS in November 2018, a controversial appointment given her work on the PACE trial, and opposing the release of the PACE data to patients and scientists, along with the other members of PACE trial management group.[1][3][4][5] In 2009, Murphy was also involved a CFS/ME conference which included health insurance Unum Provident's Mansel Ayward as Keynote speaker; Esther Crawley was another speaker at the event.[6]

Murphy is the current chair of BACME, which promotes only the biopsychosocial theory of ME and CFS, with cognitive behavioural therapy and graded exercise therapy being the treatments they recommend; no other organization's chair, president or chief executive is serving on the NICE guidelines review committee panel.[7]

(...)

British Association for CFS/ME (BACME)
Dr. Murphy is an executive member of the British Association for CFS/ME (BACME), an organization that supports GET and CBT in the treatment of ME/CFS. Her involvement with BACME included hosting the 2003 and 2005 Conferences, and being its Chair for 2004-2005, and in 2018.[9]

---------------------------------

The MEpedia page needs updating: Anna Gregorowski has been Chair of BACME since at least October 2020:

https://www.bacme.info/sites/bacme.info/files/BACME Board Members Oct 2020.pdf

and: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)

https://www.bacme.info/sites/bacme.info/files/BACME Position Paper on the Management of ME-CFS October 2020.pdf

"BACME supports grading activity strategies when delivered by an ME/CFS specialist clinician to make increases and improvements in physical, cognitive and emotional function from an identified stable baseline. BACME does not support inflexible Graded Exercise Therapy (GET) built on a primary deconditioning model. A deconditioning based approach would involve an inflexible, structured approach where regular increases in activity are encouraged regardless of how the patient is responding.

"BACME supports the use of Cognitive Behavioural Therapy (CBT) strategies and other psychological interventions with the aim of developing management strategies delivered by a specialist ME/CFS clinician who has a good understanding of ME/CFS. BACME does not support the use of inflexible CBT programmes delivered by practitioners who do not have a good understanding of the biological aspects of ME/CFS."

 

[JemPD]

Being in stimulating company makes me completely over-stimulated, and filled with adrenaline to the extent that my hands go shaky.

I'm autistic, though, I don't know whether that has anything to do with it? Laughing at a funny book or TV programme when I'm on my own doesn't have the same effect.

Thats really interesting Kitty, because i also get overstimulated after something exciting or stimulating company. I also get shaky, although it's my teeth that chatter rather than my hands shaking. But that feels different than the 'nice' bodily effect of being angry/afraid - which lessens pain & makes me feel "good".

The overstimulated by company sensation actually just feels like someone has turned up the speed dial in all my systems - heart racing, teeth chattering, mind racing. It feels very unpleasant & i feel in pain & unwell with it, like being in PEM already but having taken a massive stimulant on top of it, rather than it having a pain numbing & energising effect like the adrenaline surge of fight/flight. Both prevent sleep but for different reasons. I actually hadnt linked the 2 things as they feel very different to me. But yes i do see what you mean.

 

[Kitty]

Thats really interesting Kitty, because i also get overstimulated after something exciting or stimulating company. I also get shaky, although it's my teeth that chatter rather than my hands shaking. But that feels different than the 'nice' bodily effect of being angry/afraid - which lessens pain & makes me feel "good".

Interesting! It's the normal adrenaline for me, which is a pleasant energy surge at the time. As you say it suppresses pain, and along with it all vestiges of weakness and fatigue.

 

[Keela Too]

Meh…. I lost connection while writing a post in reply to several comments here… and the internet ate it.

Tomorrow….

 

[adambeyoncelowe]

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.

 

[livinglighter]

This illness is so complex……

My current take is, every day, I wake up tired, perhaps from some metabolic impairment. Despite this, I push through my symptoms which, according to BACME, means I’m going over my baseline. In order to push through, I may be using adrenaline because I notice as soon as I’m done with the task, I have to quickly sit/lay down to rest because I’m very fatigued - not PEM, but immediate fatiguability.

The ME specialist I’ve recently started to see said something about a lowered Anaerobic Threshold (I can’t remember, but it's all to do with C-PET testing). I’m wondering, could I be using adrenaline to compensate for an energy making deficit and a lowered AT?

Would it also be good to collaborate with organisations like BACME if they are interested in biomedical research? Wondering if the changes needed are also better done from the inside rather than solely from the outside?

 

[Peter T]

My current take is, every day, I wake up tired, perhaps from some metabolic impairment.

Perhaps a red herring, but I wonder if there are at least two potential components in unrefreshing sleep.

I regularly wake up in the morning feeling terrible and need several hours rest before I can face the world. Often I will get up for a short will, to bring the milk in, feed the cat when she was still alive and if hungry have breakfast. I would then need to go back to bed often feeling so cold that it would take an hour or more to feel warm again. At such times it feels like the act of sleeping leaves me more tired.

However that feels different to the sense of a shifting of my body clock, that can also happen regularly. Often it feels like my body clock is in free wheel and I can end up feeling like it is the middle of the night in the middle of the day. At such times I don’t feel hungry, food just sits uncomfortably in my stomach, my brain is more sluggish than normal and I just want to go to sleep, even if sleep eludes me. Subjectively this is reminiscent of the pre onset experience of having to get up in the very early hours of the day to go on a journey

 

[Sly Saint]

"Dr Gabrielle Murphy at Royal Free Hospital says: “Once again the Sussex & Kent ME/CFS Society is hosting a conference that leads in its platform of speakers, all at the forefront of research and clinical delivery of services in the United Kingdom. It is a particularly important conference in the light of what we have learnt and are still learning about Covid-19, and its long term effects as a post infection syndrome, and of course the publication of the new NICE guidance on ME/CFS. Top of the topics are interoception and what has been learned since the early work over a decade ago, and new light shed on inflammatory markers and gene expression. It really is a conference not to be missed.”

https://www.s4me.info/threads/united-kingdom-sussex-kent-me-cfs-society-news.1906/page-7#post-383340

"Interoception is the perception of sensations from inside the body and includes the perception of physical sensations related to internal organ function such as heart beat, respiration, satiety, as well as the autonomic nervous system activity related to emotions "

 

[chillier]

It would definitely be a good thing for BACME and it's fontline clinicians to be more connected to the biomedical research community. How many of their OTs/therapists are even aware of DecodeME for instance? I personally know of some who weren't before I told them recently, which is strange when they have access to all the new patients who they could pass this information onto.

In addition, getting samples from ME patients for biomedical research is another bottleneck. The patient community and the researchers may be willing, but the infrastructure just isn't there for easy access to these patients. There is the ME biobank, but as I understand it external access to them is not trivial - not to mention that I'm not sure if these patients fit the canadian consensus criteria or not.

Having BACME tied more closely to biochemical research - maybe having channels for contacting them for this purpose, sample collection and dealing with ethics would be extremely valuable. Some of this might require a lot of infrastructure and money, but maybe now the scale of the problem and our ignorance is better known this would be a good time to talk about this.

 

[rainy]

However that feels different to the sense of a shifting of my body clock, that can also happen regularly. Often it feels like my body clock is in free wheel and I can end up feeling like it is the middle of the night in the middle of the day. At such times I don’t feel hungry, food just sits uncomfortably in my stomach, my brain is more sluggish than normal and I just want to go to sleep, even if sleep eludes me. Subjectively this is reminiscent of the pre onset experience of having to get up in the very early hours of the day to go on a journey

I have this too. And many other things described in this thread like adrenaline and conversations with laughter. I know ME patients symptoms and experience often vary from person to person, but it always strikes be how similar our experiences are too, down to very specific details. I'm so sad that our experiences aren't explored and documented more by the medical community. Even if it was only for the purpose of telling their patients that yes, that experience is normal, many other patients have that symptom too.

 

[livinglighter]

However that feels different to the sense of a shifting of my body clock, that can also happen regularly. Often it feels like my body clock is in free wheel and I can end up feeling like it is the middle of the night in the middle of the day. At such times I don’t feel hungry, food just sits uncomfortably in my stomach, my brain is more sluggish than normal and I just want to go to sleep, even if sleep eludes me. Subjectively this is reminiscent of the pre onset experience of having to get up in the very early hours of the day to go on a journey

I experience this too, and in the past, early in the morning, around 6.00 am my alarm used to sound to start getting prepared for the school run - as it did before I got ill. My symptoms were so severe before I received community care help that I couldn't wake up before my body was ready to get up itself. I couldn't hear the alarm most times, and my child would have to wake me. Even if I did hear the alarm or something like my doorbell between the hours of 6.00 am-8.00 am when I woke up, I felt like death. My head was heavy, brain fog was at its worst, and if anyone spoke to me, I couldn't fully understand what was being said. Even knowing what to do, like get in the shower, was all jumbled.

The physios at the fatigue clinic attributed the problems to the 'well-known' altered body clock, which happens to people with ME due to HPA dysregulation. I'm not saying the things said are 100% correct, but I do appear to have a disturbed body clock that wakes me up in the middle of the night for no apparent reason. I'm tired but also wired, so I find it difficult to fall back asleep until I do something that tires me out, like reading, then when it is time to wake up as expected, I am totally fatigued with brain fog.


Edited: for clarity.

 

[JemPD]

I have this too. And many other things described in this thread like adrenaline and conversations with laughter. I know ME patients symptoms and experience often vary from person to person, but it always strikes be how similar our experiences are too, down to very specific details. I'm so sad that our experiences aren't explored and documented more by the medical community. Even if it was only for the purpose of telling their patients that yes, that experience is normal, many other patients have that symptom too.

The physios at the fatigue clinic attributed the problems to the 'well-known' altered body clock, which happens to people with ME due to HPA dysregulation.

Both the above issues imo, is due to the fact that humans always go into 'pattern matching' mode when they hear information. They try to find an experience that they are familiar with, that they've experienced or that they know about already, a box they can put what's being desrcibed, into. So in your example @livinglighter, the physios attribute it to a kind of bodyclock/jet lag experience - because thats what the'yre familiar with. But plenty of us have repeatedly told them that no, it's not like that, its much much more than that & different from that. But they just cant or wont, hear it. They assume that the patient who says 'not its not like that' is either ignorant or has some ulterior motive for wanting it to sound worse than that - eg 'secondary gains'.

And even biomedical researchers also do it, very very few of them actually hear, when we describe our experiences... hence you get researchers believing (for example) that the cacophony of sound you get on a hospital ward is merely 'distressing' for sound sensitive PwME, rather than making you very physically ill - often in a long term way.

People just try to make what we tell them fit into whatever 'pigeon holes' they already have, instead of recognising that ME needs a whole new, different pigeon hole. Those on our side do it in a respectful, genuinely trying to help way, & the BPSers do it from a condescending, patronising, insulting 'we know your experience better than you do' manner, but i have noticed it happening across the board. It's natural, but it is very frustrating.

 

[Wonko]

My understanding is that HPA dysregulation was done to death a long time ago - it only seems to have resurfaced as part of a renaissance of old ME theories, that didn't pan out, in the search to find an explanation for long covid that completely ignores all research into ME in the last 2 billion years.

It seems medicine has a flowchart of things to look at when they have no clue, and prior experience of it being 'unhelpful' doesn't alter it - evidence based it is not, no matter how many times such things have been looked at before and found wanting, the same 'research' must be done, over and over, time and funding wasted, and then with much hand wringing 'we spent all this money, we spent all this time' and found nothing wrong with these people, that we can understand, so they must be mad malingerers'.

If it wasn't for the devastation it would be comical.

Headless chickens.

 

[Andy]

How many of their OTs/therapists are even aware of DecodeME for instance? I personally know of some who weren't before I told them recently, which is strange when they have access to all the new patients who they could pass this information onto.

I can't answer as to how many, but members of the DecodeME team have been, and will be, attempting to make as many members of BACME aware of DecodeME as they can for precisely the reason you highlight.

 

[livinglighter]

Both the above issues imo, is due to the fact that humans always go into 'pattern matching' mode when they hear information. They try to find an experience that they are familiar with, that they've experienced or that they know about already, a box they can put what's being desrcibed, into.

True.

So in your example @livinglighter, the physios attribute it to a kind of bodyclock/jet lag experience - because thats what the'yre familiar with. But plenty of us have repeatedly told them that no, it's not like that, its much much more than that & different from that. But they just cant or wont, hear it. They assume that the patient who says 'not its not like that' is either ignorant or has some ulterior motive for wanting it to sound worse than that - eg 'secondary gains'.

One thing I'm very good at is being able to disagree. I'm constantly telling doctors no when the things they say do not resonate well enough with me. Sometimes they may say things that are plausible, and I will agree as a route worth considering, but if I feel what is being said is way off track like BPS theories - I'll let them know. I'm not saying what has been said is the answer and replaces the need for thorough biomedical research. But hormones that regulate circadian cortisol rhythms can be tested to identify abnormalities, so if you want help right now and want to explore if a disturbance has any part to play based on your individual experience then I don't see the problem with that.

And even biomedical researchers also do it, very very few of them actually hear, when we describe our experiences... hence you get researchers believing (for example) that the cacophony of sound you get on a hospital ward is merely 'distressing' for sound sensitive PwME, rather than making you very physically ill - often in a long term way.

People just try to make what we tell them fit into whatever 'pigeon holes' they already have, instead of recognising that ME needs a whole new, different pigeon hole. Those on our side do it in a respectful, genuinely trying to help way, & the BPSers do it from a condescending, patronising, insulting 'we know your experience better than you do' manner, but i have noticed it happening across the board. It's natural, but it is very frustrating.

It must be challenging for patients, doctors and researchers. How does one who has studied medicine for nearly their whole entire adult life avoid dictating that they know best? How does the patient who is experiencing the illness recognise when the doctor/ researcher may possess the experience to understand the interplays of the human body as to why they are discussing things in a manner that we cannot understand? I am looking forward to some sound biomedical research into ME, but from the looks of things by the time this happens, I could be old and grey, so until then I am open to exploring some physical reasonings for why I feel the way I do - unless there is strong research to suggest otherwise.

I am new to this forum, but on PR even in the absence of solid biomedical research, there have been a few patient improvement stories once they have carried out testing received medical treatments tailored to them. It does not replace the need for biomedical research so we can understand the disease properly, but does it not help with currently improving quality of life?