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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More from @Naomi_D_Harvey

Sep 14
I don’t think enough people know this:

Please be aware of what you’re taking is anticholinergic.
This applies to basic antihistamines as well as meds like Ketotifen and travel sickness meds.

Side effects of taken in someone already low in acetylcholine can be very severe and include:
- slowed gut motility
- hallucination’s
- anxiety
- insomnia
- impaired cognition
- tachycardia
- dry mouth and dry eyes
- headache
- blurred vision
- constipation
- muscle weakness
- even seizures

ncbi.nlm.nih.gov/books/NBK55589…
Read 5 tweets
Aug 24
In PEM after 15-20 min laptop time working on PIP form two days ago. Presumably, that laptop time pushed me over the anaerobic threshold & caused damage. Muscles hurt all over, hands weak and painful, hard to chew and swallow. Decided to check my lactate #TheAcidTest
I’ve had magnesium this morning (which lowers it) & my normal resting lactate for an hour after eating with Mg on board should be 2.1mmol/l, elevated but not enormously.

Today? 4.5mmol/l 😒 confirms my mitochondria are struggling more than usual, & validates why I feel so bad. Lactate meter showing a reading of 4.5mmol/L
@sunsopeningband
Read 5 tweets
Jul 17
Medical alert card for #MEcfs along with lanyard

Will post links to POTS and other cards in reply
etsy.com/uk/listing/120…
Medical alert card with lanyard for #POTS

amazon.co.uk/orthostatic-Ta…
@stickmancrips has some great communication cards including packs like this one for autonomic dysfunction #LongCovid #POTS #Spoonie

stickmancommunications.co.uk/product/autono…
Read 7 tweets
Jun 26
Hi 👋🏻 I seem to have gained a few new followers lately. So a brief introduction seems due!

I’m a research scientist with a specialist topic in companion animal behaviour & welfare, skills in veterinary epidemiology & psychometric tool development.

I’m also chronically ill ♿️
I’ve been chronically ill with #MyalgicEncephalomyelitus since a virus destroyed my health aged 15. I also recently learned I have #POTS too.

I’m a patient-expert in ME and my body reacted so badly to my Covid vaccines that my ME is now Severe. I cannot work & am housebound.
I need a wheelchair on the rare occasions I can leave the house, but cannot push myself etc so I rely on my spouse as my carer.

I can stand and walk very short distances so I am what’s called an ambulatory wheelchair user.
Read 6 tweets
Jun 24
“Our results demonstrate that pantethine, which is well tolerated in humans, was very effective in controlling SARS-CoV-2 infection and might represent a new therapeutic drug that can be repurposed for the prevention or treatment of COVID-19 & long COVID” nature.com/articles/s4159…
“cellular expression of the viral spike and nucleocapsid proteins was substantially reduced, and we observed a significant reduction in viral copy numbers in the supernatant of cells treated with pantethine”
Pantethine is thought to have antiviral actions because it reduces cholesterol levels. Viruses, especially SARS-CoV-2 use cholesterol to replicate and infect our cells.

The body often dramatically reduces cholesterol production in response to viral infection for this reason.
Read 7 tweets
Jun 22
Brief thread 🧵 on potential ways to mitigate against glutamate exitotoxicity in #MEcfs and #LongCovid
Glutamate has long been known to be involved in the pathology of #MyalgicEncephalomyelitis and more recently in Long Covid.

Recent neurology research confirmed there is significantly elevated glutamate in the brains 🧠 of pwME and LC .amjmed.com/article/S0002-…
Glutamate is a necessary neurotransmitter but when it’s present in elevated levels it can become toxic to neurons.

It’s heavily involved in causing seizures and symptoms such as light and sound sensitivity.

More info here:

healthrising.org/blog/2013/02/1…
Read 20 tweets

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