I’ve recently managed to email the UK Brain Banks to see if any will accept tissue donations for #MEcfs research. Unlikely any will, but I’ll update you all when I hear back 🤞🏻
Cambridge said they don’t as they focus on neuro degenerative diseases but that they’d raise it at their next management meeting.
Answer from Sheffield: “We are not funded to collect such cases, I am afraid. However, the Neurodegenerative Diseases Brain Bank in King's College in London, have an interest in COVID-related neuropathology, so may be able to accept long covid cases”
Answer from Edinburgh:
“Thank you for your email but I’m afraid the Edinburgh Brain Bank does not accept donations from people with ME/CFS.”
Short and sweet 😕
Answer from London, Kings College Brain Bank is positive!
“In general, our brain bank would be able to accept donations from patients with ME/CFS and there is a research interest locally. However, we have suffered severely with funding cuts recently so do need to look at each..”
“donation on a case-by-case basis - there are some donations that we are no longer able to accept due to distance from us, timings (including coroner involvement) & some clinical exclusions. We’d encourage anyone with an interest to contact us directly & we can discuss further”
Newcastle Brain Bank: positive!
“In principle I think we would be prepared to accept donations from those with ME/ CFS should they be offered…we are now looking at the feasibility of collecting tissue from those with other neurological disorders & ME could certainly be…”
“considered for inclusion in this…geographical factors are quite important in brain donation due to the practicalities of collecting the tissue quickly after the donor has died & so we would not really be able to offer this to potential donors living in other parts of the UK…
“…We bank the tissue and researchers apply to us for whatever they need to further their studies. I don’t think we have ever received any enquiries about tissue from those with ME/CFS before but that does not mean of course that it is not in demand”
So, if you have #MEcfs or #LongCovid and live in the Newcastle area and you want to sign up to donate brain and spinal tissue after your death, you can get in touch here nbtr.ncl.ac.uk
MS and Parkinson’s Brain Bank at Imperial in London: positive!
“We do accept donations from patients with ME/CFS as a part of our MS cohort. So far we did not get any donors with ME/CFS.”
So if you have #MEcfs and #MS and want to donate your tissue after death, get in touch.
Reply from Manchester Brain Bank: semi positive
“Whilst, in principle, we are more than happy to support these types of donation, there is a cost implication. The cost per brain donation for retrieval, storage and research access for five years is almost £10,000…
see brainbanknetwork.ac.uk/public/aboutuk…). Without funding from an established ME/CFS charity or other supporting body, we would not be able to bear the full costs of collecting brain donations from individuals with ME/CFS.”
They asked if I know of any charities they can approach to discuss.
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Given it’s released after exercise, people with #MyalgicEncephalomyelitis and #LongCovid with PEM may surely be considered to be low in circulating Irisin.
Importantly: “soluble irisin…is sufficient to confer the benefits of exercise on cognitive function”
“Since irisin does not specifically target amyloid plaques, but rather neuroinflammation directly, we’re optimistic it could have beneficial effects on neurodegenerative diseases beyond just Alzheimer’s,” added Wrann.
Moving forwards, more of those with covid induced-ME/CFS will either have no diagnosis or will be diagnosed with ME/CFS just as anyone else who develops it from an unknown cause.
Mixed in with them will be those with non-covid-ME/CFS from EBV etc that’s still happening.
If ME/CFS is left out (original and Covid induced), then those who have Long Covid moving forwards will be left out also, as the diagnosis will not last in the numbers it has achieved with copious testing available. It’s already happening and has been for 1-2 years now.
Check your choline intake: are you getting enough? #MEcfs #LongCovid
In people who have a variation of the PEMT -744 gene with one change from G-->C (rs12325817) 78% developed organ dysfunction when fed a low choline diet
Choline deficiency is more likely in those with folate or B12 deficiency since choline is utilised more for methylation in the absence of those B vits.
Lack of choline leads the body to cannibalise it’s own cell membranes to keep blood levels above 50% ods.od.nih.gov/factsheets/Cho…
Choline levels have been found to be depleted in #pwME
Revisiting this in depth metabolomics paper on ME/CFS.
Of the 6 such studies “common threads in the results from all these studies are decreased levels of phospholipids and metabolic dysregulation” ncbi.nlm.nih.gov/pmc/articles/P…
“we observed decreased levels of phospholipids, especially plasmalogens and phospholipid ethers”
My takeaway: Phospholipids may be crucial for pwME to supplement, even if they don’t touch symptom levels, but for basic cellular support.
“Plasmalogens are abundant phospholipid ethers that protect phospholipids and lipoprotein particles from oxidative stress and associated damage”
As @chydorina has highlighted, plasmalogens may be an important target in ME/CFS supplemental therapy. Really need to be cheaper tho!
@cstroeckw I think it could. I’ve just started a trial on myself. But there are good reasons why some pwME could react v badly also. It carries a risk of metabolic acidosis via pushing mitochondria into anearobic activity. Many of our mitochondria already do this too much anyway.
@cstroeckw The main risks for a bad outcome on Metformin are 1) hypoxia and 2) poor renal clearance of lactate. We know from #TheAcidTest some pwME have poor lactate clearance as standard, and may have chronic hypoxia from poor blood flow.
@cstroeckw So imho as a biologist not a medic, I think to trial it safely it’s best to address clotting and blood flow first. Then check for renal clearance and resting lactate levels. For me, I’ve done all this, my lactate clearance is good, resting lactate is mildly elevated but ‘normal’