Neurophysiology of pain in ME and FM - unpublished study by White and Bourke - CFS research Foundation/AfME

obeat

obeat

Senior Member (Voting Rights)
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obeat said:
Several years ago CFS research Foundation raised money for a pain study. After Anne Faulkner died, Afme took it over. I havent seen any paper and I've written twice to Afme about this. Got no reply. Any ideas?
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Maybe ask Clare Ogden on here why you’ve not had a response - she is their comms lead and has their account here ‘@Action_for_ME’
 
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obeat said:
Several years ago CFS research Foundation raised money for a pain study. After Anne Faulkner died, Afme took it over. I havent seen any paper and I've written twice to Afme about this. Got no reply. Any ideas?
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That's the one where they gave money to Peter White, isn't it? https://www.actionforme.org.uk/reso...ology-of-pain-in-me-study-about/?c=c_db&f=178

It seems possible that some people were taking advantage of the CFS Research Foundation in the final years of Faulkner's life. It certainly seemed to change its tone on certain things.
 
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Huh?

"This is the first study, to the authors’ knowledge, that has provided clear and validated evidence of the presence of central sensitisation in both CFS and fibromyalgia. It is also the first study to compare fibromyalgia and chronic fatigue syndrome in this regard [...] The clinical relevance of central sensitisation in CFS and fibromyalgia is twofold – firstly in that QST are essentially bedside tests and can be performed in the clinic; the second is that it may have potential as a therapeutic drug target, defining a physiological abnormality that may be moderated by pharmacological correction."
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I can't make out from the report what they actually did to find this clear and validated evidence.

Pain phenotypes were determined in all participants by a standardised battery of quantitative sensory tests (QST). These tests are able to detect central sensitisation, a hypersensitivity of the central nervous system proposed to underlie the pathophysiology of both chronic fatigue syndrome (CFS) and fibromyalgia (Bourke, Langford et al. 2015). The QST focussed on measures of diffuse noxious inhibitory controls or conditioned pain modulation (Table 2) and temporal summation (Table 3).
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(For those of you like me with no idea what temporal summation is: "Temporal Summation is a CNS condition, which demonstrates an increase perception of pain to repetitive painful stimuli.")

Wasn't there a recent study that didn't really find any significant differences between how people with and without CFS experienced pain, even though the researchers were clearly trying very hard to find some?


Part 2 of the study, using fMRIs, appears to have been a totally unmitigated flop.

We found no significant difference between cases and controls or between case groups, when comparing responses to pain in placebo, naltrexone, and amilsupride scans. Our findings in the interim analysis conducted at an earlier point in the study that suggested a significant difference between cases and controls likely reflected a type 1 statistical error. Owing to the complexity of the analysis of the imaging study, we are unable to report beyond these results at present.
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No, I don't think it was questionnaires. I think it was more like
A. someone stabbing the patient with a sharp object, over and over again and asking if the pain was getting worse or better.

B. And then applying very cold water to one part of the patient's body for a long time while repeating A.

but then I'm speculating.
 
Hutan said:
No, I don't think it was questionnaires. I think it was more like
A. someone stabbing the patient with a sharp object, over and over again and asking if the pain was getting worse or better.

B. And then applying very cold water to one part of the patient's body for a long time while repeating A.

but then I'm speculating.
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Ah. I read QST as yet another flawed questionnaire.

So the pain was self-reported? But they were unable to see any meaningful difference on fMRI to indicate central sensitisation objectively?
 
Where was it shown that a QST shows central senzitation?

These tests are able to detect central sensitisation
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How exactly? Where's the evidence?

Hutan said:
Temporal Summation is a CNS condition, which demonstrates an increase perception of pain to repetitive painful stimuli
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Isn't that normal? I remember as a child, if someone beat me repeatedly on a certain place it hurt more. I think it's quite normal.
 
adambeyoncelowe said:
So the pain was self-reported?
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Yes, a QST is subjective in the sense that you rate the pain you feel (or don't feel) via numbers of 0 to 100. But it's also objective in some parts. A QST is standardized.

First, your perception of cold and hot and your ability to distinguish warm from cold is tested. For this, a machine through which water gets pumped with a plate is put on the hand and then foot. Then the plate gets warm (up to 50°) and cold (down to 5°) very fast. This is objective in the sense that the tester knows when the plate is warm or cold, and if you say "cold" when it's actually warm it shows - if you don't cheat - that you have a problem.

Then you have to say at which point of warm or cold you feel pain. It's normal to feel too low or high temperatures as pain. This is subjective in a way. There are normal ranges.
For me, at 50° I started to feel pain, and 5° weren't painful at all.

The test goes on with little "needles" which are punched with a standardized force into the hand and foot. (For me, this was absolutely not painful.) Regarding pain, the rating is subjective. You have to distinguish during this test if a needle is pointed or flat. This, again, is objective.

In the last part of the test it's about pain rating alone. Objects like a q-tip, brush, needles are put on the hand and foot in a certain order and you have to say how painful that is for you. Here's also the "repeated punch leads to pain test". For me, this was barely/not painful and some needles I couldn't feel at all.
 
Inara said:
Yes, a QST is subjective in the sense that you rate the pain you feel (or don't feel) via numbers of 0 to 100. But it's also objective in some parts. A QST is standardized.

First, your perception of cold and hot and your ability to distinguish warm from cold is tested. For this, a machine through which water gets pumped with a plate is put on the hand and then foot. Then the plate gets warm (up to 50°) and cold (down to 5°) very fast. This is objective in the sense that the tester knows when the plate is warm or cold, and if you say "cold" when it's actually warm it shows - if you don't cheat - that you have a problem.

Then you have to say at which point of warm or cold you feel pain. It's normal to feel too low or high temperatures as pain. This is subjective in a way. There are normal ranges.
For me, at 50° I started to feel pain, and 5° weren't painful at all.

The test goes on with little "needles" which are punched with a standardized force into the hand and foot. (For me, this was absolutely not painful.) Regarding pain, the rating is subjective. You have to distinguish during this test if a needle is pointed or flat. This, again, is objective.

In the last part of the test it's about pain rating alone. Objects like a q-tip, brush, needles are put on the hand and foot in a certain order and you have to say how painful that is for you. Here's also the "repeated punch leads to pain test". For me, this was barely/not painful and some needles I couldn't feel at all.
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Perfect, thanks. So how does this show central sensitisation, rather than, say, peripheral neuropathy?
 
adambeyoncelowe said:
Perfect, thanks. So how does this show central sensitisation, rather than, say, peripheral neuropathy?
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That was my question in post #10. The QST is used to diagnoze Small Fiber Neuropathy (as one part of it). I would be interested in knowing if there's evidence for a correlation between QST and central sensitisation. It's just a guess - there is no evidence.
 
Inara said:
That was my question in post #10. The QST is used to diagnoze Small Fiber Neuropathy (as one part of it). I would be interested in knowing if there's evidence for a correlation between QST and central sensitisation. It's just a guess - there is no evidence.
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I realise I replied to you, but that was a general question--and rather a rhetorical one, at that.
 
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