ME Biobank (UK) opens for business…..

[charles shepherd]

Just FYI, ME/CFS is very often considered as depression in France, but it is not at all called "spasmophilie". I think this started with a statement from Simon Wessely who said something like, "they don't have CFS in France, they instead have something called spasmophilia"

It was in support of his theory that CFS is culturally driven and that every country has its own expression of somatisation, with a specific set of symptoms.

The term spasmophiplie was very used in France 20 years ago, it's slowly disappearing to align with international classifications. I'm not particularly knowledgeable about all this stuff, but I think spasmophilia is now considered to equate in part with hyperventilation and panic attack.

As you are probably aware, there is very little recognition of ME/CFS in France by the medical profession

I picked up the term Spasmophile from a French doctor at an international conference several years ago

If we have any French readers it would be interesting to know if it is still used in relation to ME/CFS and FM…

There isn't very much in the medical literature on Spasmophile but here is one reference:

http://www.ncbi.nlm.nih.gov/pubmed/11587673

 

[charles shepherd]

Thanks! But regardless of how it's classified, are the tests being used for the biobank capable of detecting it?

Sorry - not quite sure what you are asking

The ME/CFS Biobank blood samples can be used to test for evidence of systemic inflammation but you cannot find evidence of low level neuroinflammation from blood samples

C

 

[Sasha]

Sorry - not quite sure what you are asking

The ME/CFS Biobank blood samples can be used to test for evidence of systemic inflammation but you cannot find evidence of low level neuroinflammation from blood samples

C

I'm sorry! My fault. My question (off-topic!) was in relation to the post-mortem samples of brain tissue.

 

[charles shepherd]

I'm sorry! My fault. My question (off-topic!) was in relation to the post-mortem samples of brain tissue.

Now that we are starting to have some evidence (especially the neuroimaging study from Japan) of neuroinflammation affecting specific anatomical areas in the brain (i.e. thalamus and link to pain in the Japanese study) then this is something that can clearly be looked at in future post-mortems

Summary from MEA purple booklet:

· Neuroinflammation, which could be linked to activation of microglia or astrocytes, was found to be present in several key areas of the brain in a study from Japan that used 11C-(R)-PK11195 in nine ME/CFS patients and 10 healthy controls (Nakatomi et al 2014). In the ME/CFS patients, increased BPND (non-displaceable binding potential) values in the amygdala, thalamus and midbrain positively correlated with cognitive impairment score; BPND values in the cingulate cortex and thalamus correlated with the pain score, and the BPND value in the hypothalamus correlated with the depression score.

 

[Cheshire]

As you are probably aware, there is very little recognition of ME/CFS in France by the medical profession

I picked up the term Spasmophile from a French doctor at an international conference several years ago

If we have any French readers it would be interesting to know if it is still used in relation to ME/CFS and FM…

There isn't very much in the medical literature on Spasmophile but here is one reference:

http://www.ncbi.nlm.nih.gov/pubmed/11587673

I don't really understand why he told you so... Spasmophilia is mainly caracterised by muscle tetany, so I don't see any link with CFS. And I've never come across anyone talking about CFS as being the same as spasmophilia. The only link I can see is that both conditions are controversial and thought to be psychosomatic.

 

[Sasha]

Now that we are starting to have some evidence (especially the neuroimaging study from Japan) of neuroinflammation affecting specific anatomical areas in the brain (i.e. thalamus and link to pain in the Japanese study) then this is something that can clearly be looked at in future post-mortems

I thought the post-mortem samples were banked? Isn't this something that can be examined in existing samples?

 

[Aurator]

As you are probably aware, there is very little recognition of ME/CFS in France by the medical profession

I picked up the term Spasmophile from a French doctor at an international conference several years ago

If we have any French readers it would be interesting to know if it is still used in relation to ME/CFS and FM…

There isn't very much in the medical literature on Spasmophile but here is one reference:

http://www.ncbi.nlm.nih.gov/pubmed/11587673

There's a recent discussion of "la spasmophilie" here:
http://www.europe1.fr/emissions/le-specialiste-sante/spasmophilie-quest-ce-que-cest-942984
In brief, it is said to involve muscle spasms, (spasmophilie is literally "fondness for spasms"), hyperventilation, anxiety and panic attacks. The speaker talks about it being psychosomatic.

The interviewer asks then whether it is "psychological". The speaker says (1min. 25s.) that in the majority of cases the trigger is psychological, but that there's a link with a lack of magnesium and calcium.

Cheshire can give you a better synopsis of the interview, I'm sure.

 

[charles shepherd]

I thought the post-mortem samples were banked? Isn't this something that can be examined in existing samples?

The post-mortem tissue specimens are kept by our neuropathologist at Addenbrooke's Hospital in Cambridge and can be made available to researchers who are interested in this aspect of ME/CFS

But we only maintain small amounts of tissue from selected organs - central nervous system, dorsal root ganglion, skeletal muscle, intestinal wall etc

We do not (as yet) have a formal 'brain and body bank" where a much larger collection of body parts, including brains, are collected and stored

 

[K22]

I thought the feasibility study on the post Mortem bank had been completed a while back and it was mainly lack of resources (which I'd have thought the MRC could provide) which was keeping us without a post-mortem tissue bank.
http://bmcresnotes.biomedcentral.com/articles/10.1186/1756-0500-7-370

 

[charles shepherd]

I thought the feasibility study on the post Mortem bank had been completed a while back and it was mainly lack of resources (which I'd have thought the MRC could provide) which was keeping us without a post-mortem tissue bank.
http://bmcresnotes.biomedcentral.com/articles/10.1186/1756-0500-7-370

Yes, the post-mortem (brain bank) feasibility study was completed (and published) and we do now have most of the basic information on costings, protocols, ethics etc that would be needed to set up a dedicated 'brain bank' for ME/CFS here in the UK - like the ones for MS, Parkinson's Disease etc

The main problem is that a large sum of money would be required to set up this item of research infrastructure and guarantee its existence for the first few years

We were doing this in parallel with setting up the ME Biobank, which is now costing us over £40,000 per annum to maintain (on top of cost recovery money) and we just could not afford to do both

Hopefully, the UK will get a post-mortem research facility in due course….

 

[lansbergen]

that would be needed to set up a dedicated 'brain bank' for ME/CFS here in the UK - like the ones for MS, Parkinson's Disease etc

Does the UK not have one bank for all brain diseases?

 

[charles shepherd]

Does the UK not have one bank for all brain diseases?

UK brain bank network:

http://www.mrc.ac.uk/research/facilities/brain-banks/

We make use of the brain bank facilities at Addenbrooke's Hospital in Cambridge - because that is where our neuropathologist is based

 

[K22]

This is the history of MRC involvement in brain banks I've just scanned. 3 were funded by the MRC to investigate the neurological affects of HIV in 1990
http://webarchive.nationalarchives....cationspolicyandguidance/browsable/DH_4894188
The MRC also contribute to the Parkinsons one
The UK CFS charities cannot be expected to finance this alone for an illness so trivialised and poorly recognised.

 

[charles shepherd]

This is the history of MRC involvement in brain banks I've just scanned. 3 were funded by the MRC to investigate the neurological affects of HIV in 1990
http://webarchive.nationalarchives.gov.uk/ /www.dh.gov.uk/en/publicationsandstatistics/publications/publicationspolicyandguidance/browsable/DH_4894188
The MRC also contribute to the Parkinsons one
The UK CFS charities cannot be expected to finance this alone for an illness so trivialised and poorly recognised.

I have been having informal discussions about an ME/CFS 'brain bank' with people who are involved with the MRC network and with MRC funding……...