Research news from Bhupesh Prusty

Science takes a long time, especially in an underfunded field such as ME. Things would be different if the need for ME research was treated with the same level of urgency as coronavirus is currently.

Having said that

Not sure why $30k is an issue for the OMF to find, https://www.omf.ngo/wp-content/uplo...n-Audited-Financial-Statements-12-31-2018.pdf

 

Further thought; as well as identifying the something in the blood, a GWAS study would be useful to identify cause; Chris Pointing has applied for UK Government funding for this. £2 million for the GWAS study roughly £10 for each person in the UK with ME --- lets hope the UK Government funds that. So yes lots of ways to move ME research forward --- funding is the problem!

@Simon M

 

Just to clarify, it's highly unlikely that the GWAS, by itself, will identify the cause. In my opinion, the likely result is that it will offer up a number of targets that will need to be researched further to determine their importance.

It's actually £3.5 million.

 

just out of interest have SW, MS or TC ever been asked why pwME / CFS are not allowed to donate blood in the UK?

(and before they or someone says it's because they don't want to make patients worse, that's not what it says on the NHS site)

"ME : Post Viral Fatigue Syndrome
I am sorry but unfortunately, we cannot accept a donation if you have this condition or if you have previously had the condition even if you are now recovered."
https://my.blood.co.uk/knowledgebase/Index/M

 

They justify it by saying that anyone who is actively ill with anything should not give blood because it is potentially dangerous to them, not because people with ME actually have a physical disease, perish the thought. The slight feeling of fatigue anyone gets after donating blood would send our damaged psyches into overtime so it is a protection for us.

I think the blood transfusion people are wary because of past scandals so won't take any chances. It is very unlikely it is because anyone in authority thinks we have a transmissable disease.

 

Has that advice been "firmed up" to include those recovered from the condition, or was it always thus? It is hard to see how those recovered would be at risk themselves from giving blood.

 

The blood donation ban came in 2010 on the back of the XMRV scare. Most countries banned people with ME from donating and all gave the potential threat of XMRV as the reason. The UK introduced the ban at exactly the same time but wouldn't admit it was because of XMRV because it would go against the "State Truth" that ME is psychological so they claimed it was for the patients benefit to protect them.

https://www.bbc.co.uk/news/health-11465723

 

My GP mentioned this to me in 2010. At least for a moment in time ME was considered serious?

 

Yea the [Apolipoprotein E (APOE)] gene association with Alzheimer's was known for 25 years (heading online). That is how long it took before they figured out the clue that gene provided to the disease mechanism! Wasn't sure I wanted to put that (25 years) in my earlier post -- normally you can rely on me for negativity!

 

https://twitter.com/user/status/1233508017368436737

 

The new machine doesnt cost $30k. The old one did they use right now. And the problem is the old one is a super specialized tool which is not needed for Cfs. The next problem is the old machine needs 24h for a sample. So they build a new one which should cost $200 and can take 100-200 samples a day. So the only Problem right now is time to build it. Thats what Ron said. But take this all with a grain of salt. Because he is telling this story for 3 years now...

 

Wow. I just looked through his tweets and the research he’s been doing and planning. What interesting results! He is so enthusiastic which is lovely, and I feel really encouraged. I really hope his results pan out and looking forward more of his results and papers to come out. Also really happy to see his crowdfunder has done so well.

 

Explanation of the picture:
https://twitter.com/user/status/1233708793772507136

https://twitter.com/user/status/1233704225252814848

https://twitter.com/user/status/1233702859356745730


About the isolated factor:
https://twitter.com/BhupeshPrusty/status/1233719655602302982
https://twitter.com/user/status/1233720246256709632

https://twitter.com/BhupeshPrusty/status/1233722114932428800

About confirming the result with the nanoneedle assay:
https://twitter.com/BhupeshPrusty/status/1233682363449847809

 

Is he saying that he knows what the thing in the blood is, now?

 

From one of his other tweets, it looks like one of his papers will be published in 2-3 weeks (he’s hoping so). I don’t know if that is the paper related to what he’s talking about now, or something else.

 

Hopefully he will finally crack the puzzle. That would be amazing.

It's a signalling problem. Whether the signal is right or erroneous remains to be seen. Right would mean that somewhere there are infected cells sending out these signals to contain the infection. Erroneous would mean that some parts of the immune system are continuing to fight even when the war has long ended.

At least that seem to be the two least far fetched explanations.

 

FWIW he's reached his fundraising target.

https://uk.gofundme.com/f/gofundmecfs-support-scientific-research-mecfs

Being a tease on Twitter is an unusual way to break research news, especially as he needs to replicate and check his findings.

We've all had plenty of false dawns... We shall see....

 

Relevant:
https://twitter.com/user/status/1233520944645365761