DecodeME - UK ME/CFS DNA study underway

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strategist said:
Wessely: no tweets about DecodeME
Sharpe: no tweets either
Henrik Vogt: no tweets either

Do they practice a biopsychosocial approach that pays attention to all important factors, or do they preach a biopsychosocial approach while practizing psychosomatic reductionism?

Not sure who else of the BPS people is active on Twitter.
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Might be worth tweeting that fact. After all BIOpsychosocial. It's right there in their name for the approach.
 
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.
 
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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.
 
Sasha said:
On the FAQs page of the DecodeME website, it says:

How long will the GWAS study take to complete?
In total, four years but we will release preliminary results as soon as we can, prior to publication. The sooner we can recruit participants, the sooner the results will be released.​

So, @Andy, @Simon M, @Chris Ponting - could we knock four years off this thing by recruiting 20,000 eligible patients by March 2021?

If I knew any PwME in real life, I'd be emailing them now! I think we all should be.
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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

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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).





 
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Michael VanElzakker said:
A #GWAS study comparing 40675 schizophrenia cases to 64643 controls found 179 significant SNP mutations, each contributing a tiny amount of variance towards overall risk.
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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.
 
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.
 
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