Naomi Harvey PhD #WearAMask Profile picture
Dec 16, 2022 13 tweets 4 min read Read on X
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

Jul 8
Ok, so I do have an ultrasound machine and I have been using it. I can take notes here if anyone wants to bookmark this thread 🧵
This is the machine I have that’s closest to the one sold in the US

I’ve only used the low setting which provides a low intensity pulsed ultrasound (LIPUS)

tensmachineuk.com/ultrasound-mac…
I’ve mostly used it where the blue circle is below for muscle pain that goes down my right side from my neck to my shoulder.

Using it for pains like that is what it’s licensed for (so this is not experimental) and it does seem to help, so that’s good. A diagram of the side of a woman’s head and neck with the back half of the side of the neck circled.
Read 8 tweets
Jun 15
Just tried my clip on phone microscope 🔬 to check my nail food capillaries and it’s worked incredibly well. This is amazing.

@BanhamGemma @renesugar @IsabelRamirezRD @dbkell @PutrinoLab @healingfromlc Microscope image of the nail fold at the base of my finger showing wiggly little red capillaries coming out of the tissue into the nail fold. Text says the date, which finger and that I have ME/CFS.
This was my thumb on the left hand. A lot fainter and sparse looking to my eye. Microscope view of thumb nail fold showing fainter wiggly small blood capillaries
*nail fold
Read 4 tweets
Jun 4
Low intensity pulsed ultrasound can also help inflamed guts:

Study 1 on mice 🐁 “transcranial LIPUS stimulation can simultaneously alleviate DSS-induced neuroinflammation and colonic inflammation”

.pmc.ncbi.nlm.nih.gov/articles/PMC11…
Study 2 (also on mice) shows it works both ways (treat gut or brain and help both)

“our results indicate that abdominal LIPUS stimulation attenuates LPS-induced colonic inflammation and neuroinflammation”

.pmc.ncbi.nlm.nih.gov/articles/PMC10…
There’s another study showing the reduction in inflammation in the gut helps strength then gut barrier lining also (again a 🐁 model)

thelancet.com/article/S2352-…
Read 7 tweets
Jan 2
@BocaHudson @SouthwestAir @FAANews @FlyTPA @FoxNews @cnnbrk @MarkWilsonTV Brian, that’s completely normal. Most wheelchair users can walk for short distances, maybe just a few steps, but they can standup and get out of the chair. We’re not ‘wheelchair bound’. It’s always been that way, but people assume incorrectly that wheelchair users can’t stand up.
@BocaHudson @SouthwestAir @FAANews @FlyTPA @FoxNews @cnnbrk @MarkWilsonTV I can walk between rooms in my house, so I can stand up and walk to a chair as well, but I can’t walk more than 50m. I need my wheelchair to get anywhere outside of the house. I am not strong enough to propel myself either, I need someone to push it. Please delete your tweet.
@BocaHudson @SouthwestAir @FAANews @FlyTPA @FoxNews @cnnbrk @MarkWilsonTV The people in this picture (whose privacy you have violated by the way) appear to be mostly elderly. It’s not at all surprising that elderly people may have disabilities and health problems that prevent them walking through the whole airport.
Read 4 tweets
Dec 30, 2024
@Bettje37 @SasBoekenwurm Being upright (even sat) can be a form of stress on the body. I can only sit upright for certain periods of time. But I don’t rest in bed unless it’s absolutely essential. I lean on my side on the sofa, reclined so not flat but not upright, legs up.
@Bettje37 @SasBoekenwurm That works for me but not everyone, some have to be completely flat for extended periods of time.

But if you had covid recently, you will be depleted in various things, glutathione especially and often zinc, B12, taurine etc,
@Bettje37 @SasBoekenwurm I’d focus on getting glutathione levels up (can either take Liposomal glutathione or the cheaper option is to take glycine + NAC, but in both cases start with v low doses and build up slowly as they have sulfur in which can upset the gut). B vitamins, minerals like zinc…
Read 7 tweets
Nov 26, 2024
I’ve often tried to make clear here how important choline is for health.

Almost none of us get enough of it by diet alone, and it is so crucial for so many bodily systems, from cells to liver & brain health.

Primarily found in egg yolks 🍳 make sure you get your choline!
Read 5 tweets

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