United Kingdom: Action for ME (AfME) news

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https://twitter.com/user/status/1503702804535386124

 

Does Sonya Chowdhury have ME?

 

No, I think her son does, though.

 

You'll have to forgive me if this initiative doesn't leave me with any more hope and optimism than I had this morning tbh.

Ok, it's scant on details, but, as with so much of what I've seen of late in the UK, all the eggs are in a DecodeME shaped basket (having had the previous batch of eggs in a NICE Guideline shaped basket), with no guarantee of any outcomes from Decode, which won't likely report findings for a number of years (if I recall correctly, I think they said c.5 years?), yet the release suggests that they will be learning from the 'genetic insights' of DecodeME.

So, my (grumpy, no, despondent) interpretation is; here's some PR, some fanfare, have a catchy name to give hope of a 'breakthrough', but if we are expecting a CoE to be set up and building on DecodeME (given that's the one study that they cite), it's not going to be something that makes any breakthroughs any time soon - but, we'll have a meeting to discuss stuff this year and hey, it's better than nothing folks..

End of grump.

 

I don't know where this incorrect impression has come from as I've seen it quoted elsewhere. I obviously can not guarantee a precise date, not least because it will depend on how quickly recruitment and receipt of samples goes, but we are hoping for sometime around mid 2024.

 

I’m almost certain it was a timeline mentioned on one of the Decode webinars, but I could obviously be wrong.

To my simple mind though, 2 years, 5 years, it doesn’t fundamentally change that there’s no guarantee that Decode will find anything of any use, yet, everything seems to be pinned on this one study. I struggle to get past that..

Where’s the parallel UK research into what’s actually going on in our bodies? There isn’t any to the best of my knowledge - perhaps I have unrealistic expectations?

This ‘Breakthrough’ unfortunately strikes me as potentially a talking shop (ala The APPG - let’s not get me started on that) that looks good on paper and in a press release, but beyond that.. Also begs the question, why hasn’t this been done sooner, if such a breakthrough was so desperately needed.

Anyhow, my brain hurts now. Suspect you get the gist of where I am with it all.

 

I like the language of "Breakthrough". I have been quite critical of initiatives in the past but this seems positive. I think it's a good idea to attract researchers to the area and emphasises the potential for making progress without saying "look, this is a really hard problem". The fact that this is focussed on genetics may attract people from other areas if they get to hear about it.

In what I recall seeing from the Decode team, there was emphasis on this being the beginning of a research programme, not the end. I found this hopeful as well and saw this as being consonant with what was said.

 

The latest I have heard is that results (not final, published results) might be seen before 2024.
The whole point of these big DNA studies IS to find out what is happening in our bodies. Take a look at the latest DecodeME blog which gives a couple of examples and makes the key point that genetic studies are particularly well suited to finding causes. If some biomolecules is higher in patients than controls, it could just be an effect of illness. But DNA differences cannot be an effect of illness (DNA is unchanged from when we are born), so DNA differences will reflect causes.

I'm not talking about a faulty gene but identifying biological mechanisms.

understandably, the only thing that will change your mind on this is what the breakthrough strategy delivers. Personally, I'm optimistic.

I think the AfME write-up could be better at explaining that, while the strategy is rooted in genetic approaches, those approaches are designed to unlock biological secrets anywhere in the body. Another good thing about such genetic studies is that not only will they provide evidence about existing ideas, but will also find evidence for causes that are not even on researchers' radar.

You are right that DecodeME is not guaranteed to find anything. The biggest issue is likely to be size. Even a study with 25,000 participants isn't that big. However, the great thing about these big DNA studies is that it's very easy to combine results from different studies. It's quite possible there will be "DecodeME" studies in other countries at a later date. And when results are pooled, there's more chance of finding results.

 

@Simon M

I just have a small question based on what you said above.

The methods to extract data used by the DeCodeME team -- are they fairly standardised across the scientific community? Or to say it differently might other countries do things the same way or are their some variables?

 

The methods are fairly standard and combining results from several big DNA studies is routine (and papers doing this pay attention to any differences when drawing conclusions).

The biggest variable is the "genotyping chip", the device used to identify DNA differences at around 1 million locations in the genome. These are all made by specialist biotech companies and there are small differences between chips. Plus, as technology advances, the chips look at more and more locations. Even so, it is still relatively easy (and reliable) to compare results from different chips.

 

At this point, it has to be accepted that ME/CFS is a very difficult problem. Even if resources hadn't been wasted on chasing down a mythological psychological cause, 20thC style biological investigation may not have advanced understanding of ME/CFS very far, or even at all. We can see from the circles that a number of US researchers are going in, that at best they are working slowly through a myriad of possibilities, driven by hunches rather than any clear science. That of course may eventually yield something helpful beyond a list of 'dead ends' but as things stand it is an approach that looks more like doing the lottery than a scheme of work with a focused end.

There's no guarantee of course but genetic studies have the potential to cut through the large numbers and identify where all forms of investigation can usefully concentrate. With something as heterogeneous as ME/CFS we probably shouldn't expect DecodeME to give a single 'answer' but there's a good chance that it will identify where further resources should be applied, short cutting the test tube work by years, even decades.

 

"Establish the first Genetics Centre of Excellence. We will establish a virtual network of M.E. researchers to work with the M.E. community, to build on the genetic insights gained through DecodeME and other studies. We will establish a programme of high-quality research, supported by the Centre of Excellence."

The idea of a non geographic "Centre of Excellence", may avoid the problem of dominance by a single geographically based institution - something which I think is a failing in the IiME proposal The Centre of Excellence for ME Elements which has become more untenable as the NHS has become ever more devolved, although of course the IiME proposal addresses issues more broadly than a Genetics CE.

 

I haven’t seen a better explanation of why we are doing what we’re doing with DecodeME. Thanks.

 

I ask myself why ME/CFS researchers didnt do such a study already long time ago when there is a solid chance that it show us right direction. I know that it´s probably the question of money but I think if we put all our community together we could find money for such a study already long time ago.

 

Costs have been falling rapidly and it's only in the last few years that a study of this size would have been affordable, even if the whole community came together. Most people probably remember that there was a proposal by Esther Crawely a few years ago. That was the right time, but it wasn't funded (and many PwME were relieved, given her track record on research methodology).

 

AfME are advertising for a Research Director.
https://www.actionforme.org.uk/get-information/about-us/work-or-volunteer-with-us/


Research Director
Hours of work: Full-time, 35hrs a week

Location: Home-based or Keynsham office

Salary: £50,000

Be honest, have you ever heard about M.E.? Many people haven't. Too many, in fact.

As the only UK charity that supports children and adults with M.E., our mission is to change that. We not only offer vital services and support to people of all ages with M.E. every day, but we're also playing a leading role in creating a breakthrough for M.E.

Could you be our new, dynamic, creative, research-experienced Director to lead our ambitious research strategy to secure change for over 250,000 people in the UK with M.E. We have created strong foundations and partnerships which will help accelerate the path to treatments and, one day, a cure? Working as part of our Senior Leadership Team, you will help ensure that we end the ignorance, injustice and neglect for children and adults with M.E. To succeed in our mission, we need empathetic, caring people who are as passionate as we are about raising awareness, improving lives and inspiring long term change. You'll find we offer a flexible and collaborative environment and diverse and challenging roles. Additionally, our mentors and coaches will be on hand to support you, while also ensuring you develop a good variety of skills along the way.

 

https://register-of-charities.charitycommission.gov.uk/charity-search/-/charity-details/1036419
They make £1,192,127 but waste a lot in employees. I'd rather give my money to Invest In ME, which is run by volunteers.

 

That sounds an odd sort of job for a charity of this sort.
Research directors work in academic units as a rule.
Large charities do have people to supervise allocation of research funds but it isn't clear that this is what this job is.

 

I'd rather ME organisations paid a fair wage and got the right people in for the job, people with qualifications and experience, and not relying on people who can afford to donate their time.

 

If you mean a large scale GWAS project, in ME/CFS, then yes, these have been carried out in a number of other, higher profile, illnesses - which does beg the question why they weren't funded earlier ---- thankfully, the expert MRC group Jonathan sat on, identified the opportunity and Chris Ponting was keen to help --- Chis mentioned his long standing friendship with Simon, on something I listened to/read.

Bit disappointed [EDIT to hear that it's likely to be] 2024 before we see the data - I thought there may be some data next year.