Central sensitisation theory - discussion thread

[anniekim]

@Cinders66, thanks for link to Times article, v useful in showing me people like White were using the troubling CSS theory in their work too. I thought people like White worked from the straightforward and preposterous model that ME patients had developed a fear of movement which led to deconditioning. The article showed he also believed the idea that the brain had wrongly signalled fatigue too early and GET by incremental activity increases was retraining the brain to accept activity. A lot of suppositions and of course ME is far more than the sole symptom of fatigue - and PACE showed GET and CBT didn’t work either!!

 

[Woolie]

Their "proof" consists of beautifully drawn circles that capture a bunch of unexplained symptoms (hence they must be related!).

Thanks for this post - so true, it really made me laugh! !!

I love how the biological, psychological and social factors are just big intersecting blobs - hey, this is crazy, but could this be a summary of the biopsychosocial model??

 

[Woolie]

The notion of central sensitisation syndrome is in a sense more insidious even than the notion of MUS because it gives the impression that we are no longer in the "unexplained" area. We have an explanation now: Your CNS is "sensitised"! Which explains everything! And nothing…

Maybe such sensitised states do exist, but in the wrong hands, i.e that of a doctor unwilling to take you seriously, that theory lends itself so easily to be used to deny the physiological reality of your sufferings. That doctor will look at you and reassure you but when speaking to you of the fancy notion of CSS, the message basically translates to:

Its already happening. I read that an S4ME member was told by the Leeds in-patient CFS facility that they had "CNS overarousal".

 

[Woolie]

At the other place one of the spanish advocates ( @NexusOwl ) told us about how this is the ME/CFS hypothesis used in Spain.
@Aroa is also here and might like to fill us in(?)

Yea, I think someone from the other place mentioned that CSS was the prevailing framework for understanding MECFS in Canada.

 

[Woolie]

In this paper we will use the term MUS to refer to symptoms which are primarily influenced by central processes rather than peripheral organ disease or injury. Some clinicians and researchers use the term “functional symptoms” instead of MUS, but this is still used disparagingly by some doctors and is probably not yet suitable for widespread use in primary care settings.”

Oh, yea, rebranding it CSS will put a sure stop to all that disparaging of patients!! !!

 

[dave30th]

@anniekim I don't think that chapter from the book that was in The Guardian indicates that White has made that claim. It quotes the others but White just blabs on about the problem with separating psychological and biological--he's not actually quoted endorsing the CSS idea. The author herself has applied it to PACE and sort of implies that's behind the trial or the treatments investigated, as far as I can tell. But PACE is very explicitly based on the deconditioning/false illness beliefs theory, according to the descriptions in the Lancet article. The PACE papers have no mention of the CSS model. If White has now shifted to the CSS model because he realizes the absurdity of the earlier theory--which Wessely et al outlined first in 1989--then he doesn't seem to have said so publicly. If someone has actually read something where he makes that point, I'd like to see how he justifies the shift.

 

[ScottTriGuy]

Yea, I think someone from the other place mentioned that CSS was the prevailing framework for understanding MECFS in Canada.

Correct.

Two clinics, on opposite ends of the country, frame ME with CSS. Both of these clinics will have staff presenting at the upcoming ME Conference in Montreal. I have little doubt they will try to promote the roll out of CCS to treat ME across the country.

The Canadian ME community has persistently and vigorously expressed our concerns about the CSS theory for its psycho elements to the Conference organizer, Dr Alain Moreau, yet they remain on the agenda. (Ric Areneau on Day 1, and Goth & Sampalli on Day 2)

The way Dr Moreau has designed the conference, patients are an after thought and excluded from being part of the audience for either of these 2 CSS promotions. On Day One (Medical Education) especially, there will be a lot of physicians with low / wrong knowledge of ME, and the CSS promoters will have a neat little package of 'treatment' for physicians to adopt for their ME patients: deep breathing, meditation, etc. But not viral testing.

So ME patients will be dependent on physicians and researchers to call out the babblers in the sessions. However, we (Millions Missing Canada) pushed for an independent patient representative to be permitted to attend all sessions on all days, and to Dr Moreau's credit, he acquiesced.

To be fair, these 2 clinics do complete disability forms so ME patients can access support, so that is a very good thing. But adopting CSS ignores the cause of ME, discourages meaningful research, diverts funding (what funding?), and frustrates and belittles patients.

The last thing we need is for CSS babble to be rolled out across the country, but the writing is on the wall. The Canadian CSSers will, like we've witnessed in the UK with their PACErs, continue to build their careers, reputations and back accounts on the back of ME patients, impeding actual research and treatment.

We are still considering our options for direct action against the babblers at the conference.

 

[adambeyoncelowe]

I have no problem with clinics trying to address neuroinflammation and activated glial cells in the brain. But CSS dumbs down and co-opts these findings for a BPS agenda.

 

[anniekim]

@anniekim I don't think that chapter from the book that was in The Guardian indicates that White has made that claim. It quotes the others but White just blabs on about the problem with separating psychological and biological--he's not actually quoted endorsing the CSS idea. The author herself has applied it to PACE and sort of implies that's behind the trial or the treatments investigated, as far as I can tell. But PACE is very explicitly based on the deconditioning/false illness beliefs theory, according to the descriptions in the Lancet article. The PACE papers have no mention of the CSS model. If White has now shifted to the CSS model because he realizes the absurdity of the earlier theory--which Wessely et al outlined first in 1989--then he doesn't seem to have said so publicly. If someone has actually read something where he makes that point, I'd like to see how he justifies the shift.

Thanks @dave30th for that clarification. I wrongly thought when the author said, ‘He (PW) doesn’t call it a central governor, but he too believes that a combination of triggers – genetic, environmental, psychological – overwhelms the body and throws the nervous system out of balance, causing the brain to reduce massively what it considers a safe level of exertion.’, she meant he had told her that. However, thanks for pointing out that he isn’t directly quoted and as the PACE paper in the Lancet explicitly says it is based on the deconditioning/false illness belief theory it is more likely the author here has applied the CSS theory onto the PACE model.

 

[Snow Leopard]

The 2 day exercise test results, namely the unusual lower performance (and it is due to lower metabolic efficiency) at the ventilatory threshold on the 2nd day suggests that any sensitisation/maladaptive signaling is necessarily happening at the cellular/peripheral level too.

 

[adambeyoncelowe]

Absolutely. Central and peripheral mechanisms seem to be at work. CSS attributes anything peripheral to the central dysfunction, so it ignores metabolic findings, for instance.

 

[anniekim]

If White has now shifted to the CSS model because he realizes the absurdity of the earlier theory--which Wessely et al outlined first in 1989--then he doesn't seem to have said so publicly. If someone has actually read something where he makes that point, I'd like to see how he justifies the shift.

@dave30th, you said above if anybody has heard of White referring to the CSS model publicly you would be interested. In the book, Cure, by Jo Marchant she discusses the theory by the sports scientist, Tim Noakes, that the brain in people with CFS may be over-estimating how fatigued the person is. Before I continue I am not certain that this theory of the brain over estimating fatigue is exactly the same as the notion of central sensitisation in pwme, that is becoming popular by psychs such as Fink in Denmark and Professor of physiotherapy, Jo Nijs, in Belgium, but I think it is along the same lines?

Online yesterday I came across a transcript of a bbc radio show in 2007 Peter White participated in about CFS. In the interview he is recorded talking about how they are starting the PACE trial which would be comparing pacing directly (though as it turned out the the type of pacing they used in the PACE trial was not the one most used by patients) with the two treatments CBT and GET, which he claimed are supported by NICE as the research evidence is there for them.

He then goes on to say that Barts would also be carrying out two studies to look for the causes of CFS. He said:

“On the etiological side, or the causative side, the two studies that we're about to start at Barts is to look at cytokines - an immune hormone - to see if - sorry, yes an immune hormone - to see if that is elevated in people who undertake exercise and activity and also at the same time, not only looking at the immune system, but reaction with the brain because we know that the immune system affects the brain. And so we're going to look at whether the brain perceives fatigue abnormally in this illness because we suspect it does, so it's both brain and immune system, it's mind and body, it's a way forward for this illness.”

Where he says they are going to look at whether the brain perceives fatigue abnormally this sounds the same kind of theory as Tim Noakes believes is happening in CFS and was discussed in Marchant’s book. I appreciate they did not refer to this model in their PACE protocol.

Marchant speculates just as elite athletes do interval training to subtly extend their limits by perhaps re-setting the brain to extend when it signals fatigue, she wonders whether the same could be done in CFS patients if Noakes is right and their brains are estimating fatigue too early. I read - if I understood the translations correctly - a Dutch clinic is advocating something along very similar lines by getting patients to gradually increase their activity to supposedly reset the brain.

As the post exertional effects of CFS (meaning CFS that meets ME criteria) is more than exacerbation of fatigue but all symptoms increasing and peripheral abnormalities have been found I think the Noakes claims have no foundation. Also of course the PACE trial on reanalysis showed GET was not clinically effective. Yet it seems this idea the brain is over estimating fatigue in people with CFS is being promoted in certain areas - and once again a form of graded activity/exercise is suggested to address it.

The transcript of the radio show can be found here http://www.bbc.co.uk/radio4/youandyours/transcripts_2007_45_mon_03.shtml

 

[mango]

The term/concept central sensitivity syndromes is used in this proposition to the Swedish government too

Reading comments by pwme and their carers etc, it's sadly very obvious that they don't understand what CSS actually is. After having it explained to them, almost all of them still choose to believe that it's a "good, biomedical approach" I'm not sure even the people who wrote this proposition realise what it is they are suggesting, asking for more research specifically into CSS in order to "support ME/CFS patients"... Very frustrating...

Sveriges riksdag: Erkännande och stöd till patienter drabbade av ME/CFS och IBS
http://riksdagen.se/sv/dokument-lag...-och-stod-till-patienter-drabbade-av_H5021267

Google translate, English:
https://translate.google.se/transla...ill-patienter-drabbade-av_H5021267&edit-text=

 

[Milo]

The term/concept central sensitivity syndromes is used in this proposition to the Swedish government too

Reading comments by pwme and their carers etc, it's sadly very obvious that they don't understand what CSS actually is. After having it explained to them, almost all of them still choose to believe that it's a "good, biomedical approach" I'm not sure even the people who wrote this proposition realise what it is they are suggesting, asking for more research specifically into CSS in order to "support ME/CFS patients"... Very frustrating...

Sveriges riksdag: Erkännande och stöd till patienter drabbade av ME/CFS och IBS
http://riksdagen.se/sv/dokument-lag...-och-stod-till-patienter-drabbade-av_H5021267

Google translate, English:
https://translate.google.se/translate?sl=sv&tl=en&js=y&prev=_t&hl=sv&ie=UTF-8&u=http://riksdagen.se/sv/dokument-lagar/dokument/motion/erkannande-och-stod-till-patienter-drabbade-av_H5021267&edit-text=

That is a tragedy, @mango this is the experience I have in my region too. It allows health system to disregard science and to forego researching this further. It is also a dead end.

 

[anniekim]

@mango, who are the people who wrote this request? Thank you.

 

[mango]

@mango, who are the people who wrote this request? Thank you.

https://sv.wikipedia.org/wiki/Finn_Bengtsson
https://twitter.com/finnbengtsson
https://finnbengtsson.wordpress.com/

https://sv.wikipedia.org/wiki/Amir_Adan
https://twitter.com/amiradan

 

[Pechius]

I think the Noakes claims have no foundation.

Just FYI. Tim Noakes is a complete joke. He pushes his beloved ketogenic diet everywhere he goes without enough evidence.





He got a lot of heat for this tweet:


http://carbsanity.blogspot.lt/2015/05/the-babygate-files-tim-noakes-just.html

http://carbsanity.blogspot.lt/2015/06/the-babygate-files-tim-noakes-gave.html

https://www.runnersworld.com/general-interest/tim-noakes-on-trial
Although he later was found not guilty.

I don't want this guy anywhere near ME/CFS!

What he says about science.... says it all, really:


Edit:
"And sadly, South Africa’s flagship medical journal, the SAMJ, has published a Noakes paper that is a textbook example of bad science in this and other ways. Somehow, this paper got through peer-review, but I can pretty much guarantee you that if we did a Sokal-type experiment, submitting this under fictitious names, it would never get published. It’s solely on the basis of the authority of the “name” of an acclaimed scientist that it was published as a study, rather than on the letters pages or somewhere less notable."
https://synapses.co.za/lessons-bad-science-tim-noakes-samj/

We've already heard something similar, haven't we?

 

[DigitalDrifter]

Merged thread
New trial to disprove ME is psychosomatic
I've had a great idea.

Why doesn't somebody make a trial where we take 100 ME patients experiencing pain during PEM and inject 50 of them with local anaesthetics and 50 of them with a placebo. If the pain really is generated in the brain then the patient (From the active treatment group) will still be able to feel the pain, however if the pain is generated peripherally then the patient will no longer be able to feel the pain.

 

[Jonathan Edwards]

Enough local anaesthetic to prevent pain at all sites would probably induce fatal ventricular dysrhythmia.

Also abolition of pain by blocking peripheral nerves would not exclude the possibility that the pain was due to the brain misinterpreting normal inputs from the nerves.

 

[CRG]

I've had a great idea.

Why doesn't somebody make a trial where we take 100 ME patients experiencing pain during PEM and inject 50 of them with local anaesthetics and 50 of them with a placebo. If the pain really is generated in the brain then the patient (From the active treatment group) will still be able to feel the pain, however if the pain is generated peripherally then the patient will no longer be able to feel the pain.

That's not science. You need to start with a falsifiable hypothesis - only then can you start to construct experiments.