For faster progress in ME/CFS research, funders and researchers need to treat patients as partners, not subjects (Simon M blog)

Simon M

Simon M

Senior Member (Voting Rights)
For faster progress in ME/CFS research, funders and researchers need to treat patients as partners, not subjects

3partners labels.jpg​
Publicly funded research aims to benefit patients and the best way to make sure it does is for researchers and funders to partner with patients. This will ensure research prioritises what matters to patients. It will lead to more effective research. And it will help ensure that research delivers benefits for patients rather than simply “success” for researchers. Two studies underway showcase this approach, which should become the “new normal”.​

Why do charities and (via the Government) taxpayers fund medical research? Simple: to deliver real benefits for sick people. Since it’s all about benefitting patients, the current practice of shutting them out of the research process makes no sense.

We still don’t know what causes ME/CFS and have no effective treatments for it. We need a better approach to research and we need patients to be at the heart of things.

Researchers, funders and patients should now come together and work in partnership. There are three reasons why this approach should lead to faster research progress.

  1. It will focus research on the priorities that matter most to patients.
  2. It will make research more efficient and effective.
  3. It will help ensure that research is delivering progress for patients and not simply “success” for researchers.
Here is how patient involvement in research will deliver each of these improvements.

1. Focusing on the patients’ priorities
People living with Long Covid (who are experts by experience) should be equal partners in setting the research agenda.

The National Institute of Health Research
Research is supposed to deliver benefits for patients, so why not ask them what benefits they want? What research questions do patients want answered?

In the UK, the James Lind Alliance is already doing just this ....

Patients as partners
But the most radical way for researchers to engage with patients is to invite them onto the research team.

That’s exactly what the pioneering approach taken by the DecodeME study. ...


Most of its research investigators are professional scientists. But joining them are Andy Devereux-Cooke, a patient and founder of the forum Science for ME, and Sonya Chowdhury. She is both a carer for her son who has ME, as well as the CEO of Action for ME.

The study’s management group consists of Professor Chris Ponting, the lead scientist, together with Devereux-Cooke and Chowdhury. People who live with ME are literally leading the study.

...

3. Focusing on true success
For patients, research success is simply getting a better understanding of the disease, and progress towards effective treatments.

That’s not how success is defined for researchers.

Much as researchers want to make breakthroughs and help patients, their profession rewards them for publishing studies that are quoted by other researchers and winning funding for their research. They are not specifically rewarded for benefitting patients.

Researchers’ career progression – and often their very jobs – depend on these academic measures of success, and so that is what researchers will inevitably focus on.

Many people with ME/CFS would argue that not focusing on delivering for patients has been a major problem in the UK...

Partnership is the way forward

We deserve better than this, and DecodeME is an example of how patients, researchers and funders can start creating a way forward, together as equals.

Andy Devereux-Cooke, DecodeME co-investigator

We need the approach pioneered by DecodeME and Prioritise ME to be the future, not an exception.

It is time for researchers and funders to partner with patients and agree a research agenda. It is time for researchers to partner with patients as the new normal to carry out better research.

And it is time to ensure that public funds spent on research deliver for people with ME/CFS.

Let’s all work together to make this happen.

Read the FULL BLOG
 
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Simon M said:
Read the FULL BLOG
Click to expand...

Well done to all involved particularly @Andy

In terms of suggestions @Jonathan Edwards has highlighted that he participated in an MRC group looking at possible research areas - GWAS came from that*. So I suggested that [MRC review group] as a possible approach.
As you hinted Simon I did raise the issue of objective outcome measures but I only spotted this** later

@Andy I also suggested actimetry studies as a possible research area - could we have a new thread on the use of actimetry studies i.e. so that we can identify what use they could be?

*
https://www.s4me.info/threads/georg...dian-article-21-1-21.18562/page-4#post-319043

**
I do not remember this being such a stark problem in a previous draft but may have missed it. The main outcomes to be considered for assessing evidence have to be OBJECTIVE ones, since at present all trials are effectively unblinded. Subjective measures as listed are important to the patient but they are of no value as evidence. Outcomes of value would include actimetry, walking times, return to work, level of benefit requirements, NOT questionnaires. It is crucial that the technical staff collecting data are aware of this. [emphasis added]
https://www.s4me.info/threads/membe...e-cfs-guidelines-draft-scope.4816/#post-86637
 
One thing that bothered me about the ME research projects is that their email addresses disappeared. If a patient discovers something, whether a treatment or a reliable correlation between symptoms and some factor, how do they pass that along to the research community? I considered the disappearance of email addresses (or other convenient contact methods) to be a shift from trying to understand the disease to the business of fundraising, with the researchers who support that fundraising organization getting the funding for projects which support the fundraising.
 
@Simon M

One significant-ish issue is that there isn't necessarily consensus among patients on research priorities. For example, on this forum there is a strong emphasis on finding "underlying mechanisms" for the disease. The thought is that if the underlying mechanism is found, then a cure can be {easily} found. This may or not be true. But it certainly will take many years/decades (e.g. see Alzheimer's where billions have been spent with no mechanism/cure/treatment). People in this camp also want large scale RCT's of the agent that cures or treats MECFS. Of course this is a good thing, but again will take many years, esp. for novel agents where FDA approval is needed.

Another approach is to look for treatments, serendipitous or not (e.g. Abilify/Aripiprazole), where we don't really know or understand the mechanism, but the treatment seems to work.

Otherwise thanks for the blog post!
 
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@Barry @Trish @Starlight @DokaGirl - thanks, glad you liked it.

Jaybee00 said:
One significant-ish issue is that there isn't necessarily consensus among patients on research priorities. For example, on this forum there is a strong emphasis on finding "underlying mechanisms" for the disease...
...Another approach is to look for treatments, serendipitous or not (e.g. Abilify/Aripiprazole), where we don't really know or understand the mechanism, but the treatment seems to work.
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Absolutely, different patients have different priorities. And as I'm sure you saw in the blog, the goal of Prioritise ME is to draw up a list of priorities, which it is doing by making patients part of the process, as well as consulting with patients. I would be surprised if clinical trials of things that people have tried didn't feature in the top 10. Anyway – let the patients decide, that's the point.


I'd love to hear what people think about making patients equal partners alongside researchers and funders in order to produce research that really does benefit patients (which is kind of the point of publicly funded research).
 
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There may not be consensus among patients with respect to research priorities, esp. given very limited funding.

Some folks might want to fund basic mechanism type research—others would prioritize clinical trials.
 
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Jaybee00 said:
There may not be consensus among patients with respect to research priorities, esp. given very limited funding.

Some folks might want to fund basic mechanism type research—others would prioritize clinical trials.
Click to expand...
I agree with your point! We need to remember that patients are a diverse group with a range of views.

Prioritise ME has a process for compiling a top 10 of priorities. It's not about getting an agreement on a single priority.

Patients are heavily represented on the working groups and there is also a formal survey online – with a telephone number as an easy option for people who are severely affected. I would expect the priorities to emerge to be fairly representative of patient views. Certainly more representative than we are going to get on any forum.
 
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Simon M said:
I agree with your point! We need to remember that patients are a diverse group with a range of views.

Prioritise ME has a process for compiling a top 10 of priorities. It's not about getting an agreement on a single priority.

Patients are heavily represented on the working groups and there is also a formal survey online – with a telephone number as an easy option for people who are severely affected. I would expect the priorities to emerge to be fairly representative of patient views. Certainly more representative than we are going to get on any forum.
Click to expand...
And for those who haven't spotted our discussion threads on the topic, we have

UK: Priority Setting Partnership for ME/CFS

and

Discussion of suggestions for the ME/CFS Priority Setting Partnership, deadline 5th July 2021
 
Simon M said:
with a telephone number as an easy option for people who are severely affected.
Click to expand...

Sorry if this is slightly off topic but I don’t think talking / a telephone number is an easy option for a survey, if you’re severely affected? One of the hardest things for me to do is listen to people speaking, and talk back. I think that’s a similar finding in a lot of severely affected people? Screens can be very difficult too, but some can often dim the screens down etc, type on our phones, and don’t have to speak.

It may be useful though for carers to speak on their behalf, if that’s what you meant? Although carers could probably fill out online surveys too, and could take more time doing it.
 
Thanks Simon!

One aspect that also needs to be addressed though is the lack of transparency of both the MRC and NIHR when it comes to "planning" spending, and afterwards giving sufficient information about how money was spent. It is, as you say, takpayers' money, yet it is virtually impossible for me to produce a comparison of money either intended or spent on ME/CFS in comparison with other health issues. If, in the USA the NIH can produce useful tables together with both a history of spending and links to studies, surely, with all its experience, the MRC can.

Such a lack of information hampers us, and makes it easy for replies by the MRC to politicians to fudge over the lack of funding of biomedical research. Again, if we are to attract top new researchers, it has to be clear that funds and the will to invest them are there.

I'm hoping to pursue this when I get my cataracts sorted: I think this is an area where doctors with long covid and doctors with ME can add some weight.
 
This is another good sign

Dame Anne Johson, the new President of the Academy of Medical Sciences (UK) has made engagement with the public and patients one of her five priorities:

It is essential to involve the public in decision-making about research and care so that we can collectively protect and improve our health. The best way to do this is to work hand in hand with the communities we are working for to identify challenges, co-create solutions, develop effective messages and understand the best ways to share them.

It is particularly important for me to hear both from younger voices and those from disadvantaged sectors of society, including those with disability or long term health challenges, who are sadly too often missing from discussions about health and wellbeing.

(My bolding.)
 
Now, of course, the question is whether patients are equal, or whether some are more equal than others.

Because for the most part we have been excluded on the basis of not even being patients, the end-goal of psychologizing illness: it's not medical, we're not patients, we have no rights, those are for patients, as are all the rules and processes meant to protect them.

Because as much as the BPSers love to trot out the dualist thinking we don't espouse, no one is more responsible for the very clear separation between physical health and mental health than them, that's why it's always "just" depression or "just" anxiety, that's the tell in plain language that it's a trivial non-medical thing that is not their problem, and some patients will continue to be very unequal to others.
 
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