Science at the UK CMRC Conference, 1-2 Sept 2014

[NK17]

I can relate well to the feeling inflamed brain and spinal cord. Many days it feels to me like I've been hit in the back of the head by a baseball bat. And I wake up pretty much every day with pain down my spine. It is not muscular.

My GP has pretty much tuned my symptoms out and despite elevated ESR and CRP, nothing will make her believe me when i say I have lots of inflammation in my brain and spine.

The prickly feeling in my feet I don't mention because it's buzzing all the time, especially when i am laying down like now. It's a bit like radio on the AM dial, in between stations. (Oh wait, I can't say that, someone will call the psychs on me)

That's why we are here on PR, right?
Nobody but another PWME will get the I wake up every day and my brain and cord feel on fire, my whole body feels like it has been poisoned an run over by a semi-truck, all at the same time!
Nobody else could understand what it means to feel "a bit like a radio on the AM dial, in between stations" !!
It's a mind blowing condition, pun intended .

 

[Kati]

Thx for that @NK17. It's amazing to me that there are millions of us out there marginalized by the health care system and our governments and speaking the same language in term of what we are experiencing in our bodies.

While I agree that what we have may well be heterogenous, each one of us, whether we have a 'light" version or more severe we all deserve health care, curious minds and sound research.

 

[Lynne B]

Hi, everyone,

I'm not really sure if my comment is on topic, but speaking of small fibre neuropathy, burning feet, etc., Cort Johnson has some really informative posts on http://www.cortjohnson.org/, particularly his last two entries. I've found these and his earlier post on results of Dr. Rice's skin biopsies of the hands very helpful.

cheers

 

[MeSci]

I don't think I can give an intelligent answer to that one - maybe that is why I 'missed' it.

Bother - I hoped that the great Prof could help me in my quest!

Just to clarify, @Jonathan Edwards, do you mean that you doubt that there are causal associations between exertion, solute diuresis, electrolyte depletion and (the delay before) PEM, or that you just don't have any expertise on the subject?

 

[Jonathan Edwards]

Hi, everyone,

I'm not really sure if my comment is on topic, but speaking of small fibre neuropathy, burning feet, etc., Cort Johnson has some really informative posts on http://www.cortjohnson.org/, particularly his last two entries. I've found these and his earlier post on results of Dr. Rice's skin biopsies of the hands very helpful.

cheers

I am getting really confused about this small fibre business. Some studies seem to say the fibres are missing and others say there are too many. And I still cannot get my head around what concept 'fibromyalgia' supposed to be, except, as someone said, just the pain part of ME.

 

[Jonathan Edwards]

Bother - I hoped that the great Prof could help me in my quest!

Just to clarify, @Jonathan Edwards, do you mean that you doubt that there are causal associations between exertion, solute diuresis, electrolyte depletion and (the delay before) PEM, or that you just don't have any expertise on the subject?

Exercise can shift water from one compartment to another so that is no problem. I am just not clear how to fit this in to an ME type story. I think things are too complicated for me to know what to expect. I have to pass on this one!

 

[bertiedog]

I am getting really confused about this small fibre business. Some studies seem to say the fibres are missing and others say there are too many. And I still cannot get my head around what concept 'fibromyalgia' supposed to be, except, as someone said, just the pain part of ME.

They talk about it being "central sensitisation" now, ie its the brain that is the problem. Does that make sense to you?

Pam

 

[Jonathan Edwards]

They talk about it being "central sensitisation" now, ie its the brain that is the problem. Does that make sense to you?

Pam

I am beginning to see the acres of paper devoted to this buzzconcept 'central sensitisation' and I get the rough idea, but it does seem a bit rough - sort of 'it's me brain , doctor' - or maybe 'it's yer brain, guv'.If ME is 'it's yer brain guv' as well then why do we have another word? For me science begins when you can tell one thing apart from another.

 

[Kati]

Central sensitization, at least in Western Canada is equal to saying "we know the best treatment to treat it is CBT." Moreover since it's a clinical diagnosis (the dr's opinion, based on judgement that is never explained clearly in medical reports) we will not send you to expensive tests like SPECT scans or MRI.
Good luck (Door slam)

 

[A.B.]

Neurobabble exists too.

 

[Marco]

Maybe I'm wrong but I though central sensitisation was a fairly established neurological fact that can be measured and induced (and extinguished) experimentally. But rather akin to high blood pressure. Its presence doesn't tell you why its there.

Maybe we're confusing this with phychological 'theories' of hypersensitivity or whatever?

 

[Valentijn]

Maybe I'm wrong but I though central sensitisation was a fairly established neurological fact that can be measured and induced (and extinguished) experimentally.

I somewhat doubt that it exists as part of real illnesses, versus laboratory models. In CFS research (or Oxford fatigue research), a few peripheral causes are ruled out, usually muscular. The BPS conclusion is then that the only possible alternative is that it's a "central sensitization" problem and we just need to man up and learn to stop being such delicate snowflakes, with the help of CBT/GET.

Maybe there's a real foundation and use for central sensitization somewhere, but all I've seen involving it is vague and unsubstantiated bullshit. Though I'd be curious to know if there's real proof of it, versus "we can't figure out what causes this symptom, so we came up with this theory."

 

[Marco]

I somewhat doubt that it exists as part of real illnesses, versus laboratory models. In CFS research (or Oxford fatigue research), a few peripheral causes are ruled out, usually muscular. The BPS conclusion is then that the only possible alternative is that it's a "central sensitization" problem and we just need to man up and learn to stop being such delicate snowflakes, with the help of CBT/GET.

Maybe there's a real foundation and use for central sensitization somewhere, but all I've seen involving it is vague and unsubstantiated bullshit. Though I'd be curious to know if there's real proof of it, versus "we can't figure out what causes this symptom, so we came up with this theory."

What's it got to do with 'biopsychosocial'? Its neurology!

 

[Valentijn]

What's it got to do with 'biopsychosocial'? Its neurology!

Maybe, or it's pseudo-neurology, used by quacks to sound impressive while still reaching their universal conclusion that CBT is the One True Cure. Or it's both neurological and also being misused by certain BPS groups.

 

[Marco]

Maybe, or it's pseudo-neurology, used by quacks to sound impressive while still reaching their universal conclusion that CBT is the One True Cure. Or it's both neurological and also being misused by certain BPS groups.

Oh come one. What next? That nociceptive wind up only happens in the lab or demyelination was invented by quacks to sound impressive?

Yes there are a very many establised biological processes (deconditioning anyone?) that certain groups are apt to misuse. Nothing we can do about that.

I'd also add that this constant railing against 'the biopsychosocia' school is liable to make us look more than a little silly. I'm sure the BPS concept is pretty much fully accepted by mainstream medicine from the perfectly reasonable perspective that its well known that illness has psychological and social overlays and impacts (as does life in general) and that both issues are relevant to successful treatment. I'm pretty sure William Osler would have embraced the BPS model long before the term was coined and I'm also sure that Jonathan didn't ignore the psychological and social needs of his patients while ensuring they got the best biological treatment.

The issue isn't the model but the degree of emphasis placed on each by various groups which in some well known cases means little or none on the 'bio'.

If Jonathan's participation here has taught us (me) one thing then its the need for precision. We should be more precise when criticising.

Rant over and back to the thread

 

[Valentijn]

The issue isn't the model but the degree of emphasis placed on each by various groups which in some well known cases means little or none on the 'bio'.

Actually it does look the model for central sensitization is something of an issue. Based on Wikipedia's brief coverage of it, it's primarily just a theory and only supported by some flimsy research involving animal models.

Basically "if you keep poking something, eventually it will try to kick you in the face, but probably not right away". Not something that seems indicative of "sensitization" so much as "getting fed up."

Oh, plus a bit of retrospective studies trying to tie in current levels of pain with exposure to pain in the distant past. Nothing even moderately impressive, much less conclusive.

 

[Marco]

Actually it does look the model for central sensitization is something of an issue. Based on Wikipedia's brief coverage of it, it's primarily just a theory and only supported by some flimsy research involving animal models.

Basically "if you keep poking something, eventually it will try to kick you in the face, but probably not right away". Not something that seems indicative of "sensitization" so much as "getting fed up."

Oh, plus a bit of retrospective studies trying to tie in current levels of pain with exposure to pain in the distant past. Nothing even moderately impressive, much less conclusive.

Type "central sensitisation" into Google and you'll get the Wiki page and a bunch of 'pop' articles. Type "central sensivity" and a specific condition such as complex regional pain syndrome or "central sensitisation and functional MRI" and you'll get a host of peer reviewed papers.

I'm not prepared to QA the whole of the literature. I think the point is that (in my opinion) it's admissible to talk about the concept of central sensitisation as potentially playing a role in conditions where the peripheral injury doesn't appear to be sufficient to explain the pain experienced or where alloydynia or remote pain occurs etc - in general terms without having to explain the exact mechanism in every case - in the same way thay we can refer to 'autoimmune disease' in general while the specifics will differ.

 

[Marco]

Getting back on topic I'd like to ask @Jonathan Edwards a simple question.

I have never joined or even followed any ME/CFS internet groups until 2009 when the XMRV paper was published. Prior to to that it just seemed that there were a bunch of unrelated and often harebrained theories but no progress.

Debacle as it turned out to be, the XMRV story did have some major benefits in attracting the attention of major researchers, private funding and even the MRC research programme now has a sense of purpose. But still we have a wide range of sometimes incompatible theories.

Question being - how optimistic is Jonathan that we will have an 'answer' within the next 5 years (a cure or even effective treatment strikes me as a little too much to ask).

 

[Jonathan Edwards]

Central sensitization, at least in Western Canada is equal to saying "we know the best treatment to treat it is CBT." Moreover since it's a clinical diagnosis (the dr's opinion, based on judgement that is never explained clearly in medical reports) we will not send you to expensive tests like SPECT scans or MRI.
Good luck (Door slam)

I wonder how you talk to microglia - do they speak Transylvanian I wonder?

A.B. said: Neurobabble exists too.

Just what I was thinking. Well put.

 

[MeSci]

Type "central sensitisation" into Google and you'll get the Wiki page and a bunch of 'pop' articles. Type "central sensivity" and a specific condition such as complex regional pain syndrome or "central sensitisation and functional MRI" and you'll get a host of peer reviewed papers.

Maybe better to use a science journal database rather than a generic search engine. Here are the results from Highwire from searching for the phrase 'central sensitisation' in the title - you might get some more if you change the spelling to sensitization.