DecodeME - UK ME/CFS DNA study underway

Response about DecodeME from leading GP in N Ireland
"I really welcome this research to unpack this complex condition which impacts so many lives and which leaves those affected and those who endeavour to care for them without answers."

 

Someone tweeted the whole page devoted to ME/CFS

https://twitter.com/user/status/1275354638196359171

 

But the Times and Guardian clearly heard about it well ahead of them, without any help from them.

 

https://twitter.com/user/status/1275807323903180801


Amazing!!

 

Might be worth tweeting that fact. After all BIOpsychosocial. It's right there in their name for the approach.

 

WOW!

Presumably this number will also include people like myself who registered as someone not having ME/CFS, but presumably that will be a small %.

 

Someone brought up the possibility of a response by BPS people. I hope it does not happen. I would interpret the absence of a response as sign they don't know what to do as their control is slipping. If they're smart, they know that they'll have to back off eventually. Maybe that moment has finally come (if they believe that the outcome of the NICE review will be unfavorable).

If there is a response, I suspect they will be more careful than they've been in the past. So probably no stories about death threats. More something like trying to portrait ME/CFS patients as stigmatizing against mental health, perhaps even baiting people on social media with superficially innocent statements.

 

Way too much text, too many articles and comments for me to catch up with.

PEM today from just trying it. Having PEM from things that seem very good news is a comfortable situation though compared to engaging with all the bad science and with the vilifying that has been coming from 'CFS' researchers in the UK and most of Europe for decades.

Sean O'Neill even retweeted the excellent comment by @PhysiosforME .

Is it true that, in the Times online edition, even a bad (tired woman) photo was replaced?

This feels so unreal. There is a UK journalist wanting to understand -- and doing this in The Times?

Again, thanks to all involved officially and behind the scenes -- and also to everyone keeping up the good comments.

Leaving a meadow of likes here for all of you.

 

I've emailed out to the ME group I'm involved in (Chester MESH) and spread about on Facebook groups

I've been reliability informed that 10,000 have signed up already yay

X

 

I think that was atop the guardian article

 

Probably try to make it sound like it was their idea all along, and how it (somehow!) fits in with their grand plan

 

Expect to hear a lot more vague statements about neural plasticity and how we can change our biological responses. I suspect BPS will up the ante on this going forward.

 

Dr Van Elzakkar thinks it’s not the best use of money? Edit: I don’t really understand what he means by “clues are screaming environmental factors”, except does he mean viruses? But if so, there are teams looking at viruses, mould, heavy metals already in the US / Germany. (Including Prusty).

https://twitter.com/user/status/1275656575752044544


https://twitter.com/user/status/1275514440486727683


https://twitter.com/user/status/1275662102166978563

 

Guardian but the image used for social media posts hasn't been updated so it's the one people see on Twitter. Annoying.

 

My understanding is that this - each of many mutations raising risk slightly - is the norm for many diseases and the idea is to identify the biological systems that those SNPs are grouped in, to home in on the cause.

From the DecodeME FAQs:

Findings from such [GWAS] studies have helped to:

• establish the identity of numerous genes involved in Type II diabetes, such as those affecting the action of insulin on fat cells and liver cells. These studies have also helped to identify an unsuspected role in Type II diabetes for a protein that transports zinc into cells, and scientists are developing drugs that target this protein.
• reveal that microglia, the immune cells of the brain, play a key role in Alzheimer’s disease.
• demonstrate that thermogenesis, where “brown fat” cells burn off fat to produce heat, is an important pathway impacting on obesity.
• show that high levels of “good” HDL-cholesterol is simply associated with lower levels of heart disease — but is not actually protective. This explains why the pharmaceutical industry’s $5 billion investment in drugs that increase HDL-cholesterol came to nothing. Instead, GWAS helped to show that a different type of fat, the triglyceride group, does increase the risk of heart disease.
• establish that many different diseases often share some common biological mechanisms. An immune-regulating molecule called IL-23 plays a significant role in numerous autoimmune diseases. As a result of this insight, existing drugs that are used to inhibit the IL-23 pathway in other diseases have become a mainstay treatment for several autoimmune conditions, including psoriasis and ankylosing spondylitis.

​

 

Yes @Sasha that was my understanding also. Didn’t really understand Dr Van elzakker’s point or what he means about environmental factors, given a lot of research is ongoing in the areas of viruses, infections etc? Prusty for example. Ron Davis looked into infections in blood of patients & OMF have mentioned heavy metals, mould etc, too.
But we might be looking in the wrong place... or find answers somewhere we never thought to look... and a GWAS could help with that.

 

I don't know of anyone looking at mold seriously in ME/CFS, and heavy metals was a pilot study out of Stanford where they then submitted a grant application to the NIH that was denied.

 

A GWAS study is something that, all things being equal, should be done. But all things aren't equal and I am not sure it's the very best use of $4million, given all of the clues screaming 'environmental factors.'

That sounds very much like sour grapes to me. And what screams environmental factors beyond viral triggers we know about? The schizophrenia study simply shows how important genetics are and how much more we need to do to fully understand how genetic risk works.

One thing you can be sure about is that you will never see one of the DecodeME team tweeting something like that.