ME/CFS International Research Symposium, March 2019, Australia

I should note that there will be transcripts of all presentations (or sections of presentations) which were live-streamed. These will take longer to be made available, as they will need to be approved by the presenters. And there’ll be some other summaries made available too.
 
@Sunshine3 oh, that's a shame. Have you tried the little video icon in the upper right corner? If you have and it's still not working at least happy news that it will probably be on YT fairly soon:)
 
Sunshine3 said:
@Simone any idea when videos from Emerge Conference will be made available? Thank you.
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I've been able to watch some of the presentations here https://goliveaustralia.com.au/emerge2019/
However, I haven't been able to find Phair's talk - anyone know how to find it?

@JaimeS @Esperanza My impression, after viewing this talk "Professor Paul Fisher: Specific mitochondrial respiratory defects and compensatory changes in immortalised ME/CFS patient lymphocytes", is that there is an opportunity to develop a diagnostic test for ME.

Professor Fisher (and Cara Tomas) used the Seahorse analyser. Ron Davis mentioned an alternative to the Seahorse which seems to have advantages over the Seahorse analyser; however, he hasn't tested it yet.
It seems strange that NIH/the European Commission [see presentation by Dr Eliana Lacerda: The European network on ME/CFS – EUROMENE - reference to recommending biomarkers] don't just get on and fund the development, and validation, of a diagnostic test.
NIH are looking for suggestions on how to "advance ME/CFS research" [https://grants.nih.gov/grants/guide/notice-files/NOT-NS-19-045.html]; the development, and validation, of a diagnostic based on a Seahorse type analyser (or Ron Davis's nano needle) seems to be one suggestion - @JaimeS @Esperanza - for ME Action to suggest?
 
FMMM1 said:
NIH are looking for suggestions on how to "advance ME/CFS research" [https://grants.nih.gov/grants/guide/notice-files/NOT-NS-19-045.html]; the development, and validation, of a diagnostic based on a Seahorse type analyser (or Ron Davis's nano needle) seems to be one suggestion - @JaimeS @Esperanza - for ME Action to suggest?
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@FMMM1 If you go to the Agilent website you will see that the Seahorse is not approved for clinical use
https://www.agilent.com/en/products/cell-analysis/seahorse-analyzers

"For Research Use Only. Not for use in diagnostic procedures."

In addition if you look at the raw data in Dr Cara Tomas/Julia Newton Seahorse papers you will see that in fact it is not a very accurate diagnostic test.

EDIT : Ron Davis did say that he was not sure how all the sample preparation required to analyse using the Seahorse affects the sample. I believe he said that pyruvate is one of the chemicals used! So yes, a lot more work and funding needed in the diagnostic area.
 
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wigglethemouse said:
@FMMM1 If you go to the Agilent website you will see that the Seahorse is not approved for clinical use
https://www.agilent.com/en/products/cell-analysis/seahorse-analyzers

"For Research Use Only. Not for use in diagnostic procedures."

In addition if you look at the raw data in Dr Cara Tomas/Julia Newton Seahorse papers you will see that in fact it is not a very accurate diagnostic test.

EDIT : Ron Davis did say that he was not sure how all the sample preparation required to analyse using the Seahorse affects the sample. I believe he said that pyruvate is one of the chemicals used! So yes, a lot more work and funding needed in the diagnostic area.
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You've obviously looked at this more carefully than I have - good.

Yes. Ron (from memory) said the Seahorse didn't work some times and they had no idea why (worrying). Also, he said it may be necessary to do two different tests (e.g. Seahorse type thing + another). Also (to repeat myself), Ron mentioned an alternative to the Seahorse - similar but with less sample preparation (potentially good).

The current difficulty is that people with ME are labelled as having a psychological disease; therefore,
  • the "treatment" is psychological - CBT etc; and
  • biomedical ME research receives less funding - since you are responsible for your (psychological) illness.
My view is that there is enough here (Seahorse type thing + nano needle etc.) for the NIH/EU Commission to fund a large scale study to assess these technologies.
 
Simon M said:
Could you tell me where I could find a clip where he says this, please? Thanks
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Forbin said:
He spoke about it in his talk at the beginning of Day 2. He also showed a couple of slides related to the T-cell study. I did not see it "live," but a recording of the entire day seemed to be up on the site for a while. The next day, it seemed like only the afternoon portion of that recording was up there.
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@Simon M @Chris Ponting Just in case you have yet to put it on your calendar Mark Davis is talking at 1:30pm EST April 4th at the NIH conference.
https://custom.cvent.com/536726184EFD40129EF286585E55929F/files/b4e3acbbb5a145edae6748ffd273e744.pdf

Forbin said:
The news that was unknown to me (at least) was that the T-cell clonal expansion that had been seen in 4 ME patients turned out to also be showing up in controls at more or less the same frequency. I think they compared 12 patients with 12 controls, or something close to that.
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From what I remember from Ron Davis's talk there was not enough info to draw any conclusions. Some patients had TCR expansion, some did not. One who did was later found to have cancer so data for that one not valid. Some healthy controls had TCR expansion (I wonder does this mean they are not healthy).

As Neil McGregor said early in his talk he found subtyping by glucose tolerance test interesting. There could be an autoimmune group - flat glucose, lower creatinine, high ANA. It could be possible that this is the subgroup that has TCR expansion....... (or maybe not). Dr. McGregors presentation is the middle one of the three still available starting ~47min (this slide is at 59mins)
Glucose3.JPG

EDIT : So it seems the subgroup with TCR expansion is still worth studying - can any commonalities be found that might be attacking the pathways suggested by McGregors subgrouping.
 
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FMMM1 said:
It seems strange that NIH/the European Commission [see presentation by Dr Eliana Lacerda: The European network on ME/CFS – EUROMENE - reference to recommending biomarkers] don't just get on and fund the development, and validation, of a diagnostic test.
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Unfortunately I don´t think they are interested in finding biomarkers since recognising ME patients ( and presumably many more that currently are undiagnosed ) would be an economical problem if there are no treatments.
 
wigglethemouse said:
3. Lastly he announced two other drugs that correct the nanoneedle impedance signature when used with a patients blood. Copaxone and a new drug called SS31.
[Screenshot removed]

He summarised to say that they don't know why these drugs have the effect they do.

Of note is that Copaxone is an MS drug. Ron Davis has talked with MS experts and they agree that their MS patients match the diagnostic criteria for ME/CFS but insist their patients do not also have ME/CFS in addition to ME..................
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1) suramin in micro dose (currently developed as pill by naviaux
2) copaxone (IM, very expensive)
3) NEW SS31 ELAMIPRETIDE

elamipretide was developed for https://en.wikipedia.org/wiki/Mitochondrial_myopathy

some symptoms of mitochondrial myopathy:
* lactate problems, epilepsy, ptosis, hearing loss (just sounds so familiar)

testing needs muscle biopsy and looking for red ragged fibres: https://en.wikipedia.org/wiki/Gömöri_trichrome_stain

were such "red ragged fibres" ruled out via muscle biopsy from their mecfs test persons ?
(since it was said they dont know why elamipretide may work, its unclear)

mitochondrial myopathy may be rather genetically caused, i think, and (see below), there is nothing genetic with MECFS for the mitochondrial part.

... more on ... mitochondrial things
John Mac said:
https://www.meassociation.org.uk/20...gy-production-and-mitochondria-14-march-2019/
“Thus far, we have shown that ME/CFS patients do not harbor proven mtDNA mutations, another exclusion, albeit an important one. As such this group of patients do not fall within the category of patients with mitochondrial disorder.”
“If ME/CFS patients have some form of mitochondrial dysfunction, the form and cause of this dysfunction is a matter of debate.”
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FMMM1 said:
@JaimeS @Esperanza My impression, after viewing this talk "Professor Paul Fisher: Specific mitochondrial respiratory defects and compensatory changes in immortalised ME/CFS patient lymphocytes", is that there is an opportunity to develop a diagnostic test for ME.
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roller* said:
2) copaxone (IM, very expensive)
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I don't get why copaxone would work in ME. In MS as i understand it it provides something for the body to attack, essentially as a sacrificial protein. We don't have MS even if what we have might be in a related but differing family.
 
Alvin said:
I don't get why copaxone would work in ME. In MS as i understand it it provides something for the body to attack, essentially as a sacrificial protein. We don't have MS even if what we have might be in a related but differing family.
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As RD said, just because it makes the blood of pwME act normal, doesn't necessarily mean it has any practical application, but it's a good start. Lots of meds have side effects that make them have a therapeutical value beyond their intended use. My impression was that they don't know why it makes the blood act normal yet, for all we know it works as a sacrificial protein in pwME too. I really don't know, just thinking out loud:)
 
For those who want to know more about hypothyroidism and minerals/elements related to it, i analysed 20000 documents on hypothyroidism and extracted the counts of minerals/elements mentioned in these documents. Here is how it looks like :


minerals.png



It is logical to see iodine on top of the list (as it is directly related to Thyroid function) and also lead exposure as affecting negatively thyroid function. We can find selenium mentioned by Dr Davis on the 7th position. I do not know why lithium is ranked higher but with these results we can get a better understanding on which elements/minerals to focus on when it comes to low thyroid function (based on published research).

I am traveling tomorrow to the UK, i will be meeting with the CureME team at the London School of Hygiene and Tropical Medicine (LSHTM) during this week. We started a joint effort for analysing ME/CFS patient data using new techniques -not sure if i can disclose more on this for now- and publishing a paper.

I will try also to present to the team several ways with which this technology may extract interesting and actionable knowledge. I will post updates :)
 
Aroa said:
Unfortunately I don´t think they are interested in finding biomarkers since recognising ME patients ( and presumably many more that currently are undiagnosed ) would be an economical problem if there are no treatments.
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If you check out ME Actions material then you'll find references to a peer reviewed paper(s) on why certain diseases get funded beyond there impact (severity/numbers affected etc.) and others don't. E.g. HIV gets funded beyond the impact (3000 dollars per person with HIV) and ME gets nothing. Liver disease, caused by alcohol, is underfunded since those with the disease are responsible for their own illness. The reason ME gets zero funding in the EU/little funding in the US (relative to the impact) is that the ME is labelled as a psychological disease; you are responsible for your own (psychological) illness. That's one of the reasons a biomedical test would help i.e. we would then get the research dollars. Also, I don't know if there are no treatments - since we don't know what the disease is.
 
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