MEAction: The NIH responds to #MEAction, next steps

[Kalliope]

The NIH responds to #MEAction, nexts steps

Following the global day of action on May 12, 2018, #MEAction gathered photos and petition signatures from people all over the world and mailed it to Director of the NIH, Francis Collins. Along with your beautiful photos and anecdotes, we delivered a list of demands, including a meeting with #MEAction. We also asked for your help to reach out to Collins and put pressure on the NIH to respond to our demands. Your hard work paid off.
Now, we want to share that we received a response from the NIH.

 

[duncan]

"NIH representatives have presented at many ME/CFS-related conferences and meetings, including the annual Sleep Conference in 2017."

 

[Alvin]

I could only skim it but they claim to want more high quality applications, if you get the meeting i would have a list of rejected applications on hand (and the responses) and ask what they want from each one of them to get approved and get assurance that they will fund them once their "deficiencies" are addressed since they claim thats the barrier
IIRC Dr Davis has several avenues that would make use of funding if they got it and i imagine there are other groups that were denied. Not sure if this list is public or could be obtained by a FOI request, if not then we need to ask around to the experts we know and see if they have requested funding and been denied.

As an aside should we encourage a new wave of applications so when they are denied we have more ammunition in the future?
This way if they are approved we win and if denied we do the above again with added pressure.

 

[mango]

"NIH representatives have presented at many ME/CFS-related conferences and meetings, including the annual Sleep Conference in 2017."

Well, what would you expect from "Team Tired"?

ETA: For those who might not remember, or haven't seen this before. A slide from Dr Nath's presentation at the CMRC conference last year.

 

[Sasha]

Just reading the first response to the request for RFAs for various things and it's "We've already funded X, Y, Z." This is the same kind of non-response that I get if I send a request for change to my MP here in the UK and they forward it to a minister. They provide a list of what they're already doing, as though you weren't aware of that already when you asked them to do more.

 

[Sasha]

Point #2 - another non-response, and this time a weird one. #MEA are asking for development of a consensus case-definition; the NIH reply by saying they've developed common data elements (something else entirely) through a consensus process.

What?

 

[Sasha]

Reading the rest, just too angry with the non-responses to continue to comment.

 

[Sunshine3]

Well I was glad that names were requested so a meeting may happen...at least we didn't get an outright 'no'. Sleep conference is a joke all right. But I hope Collins might do more if pressure continues...

 

[Dolphin]

I could only skim it but they claim to want more high quality applications [..] As an aside should we encourage a new wave of applications so when they are denied we have more ammunition in the future?
This way if they are approved we win and if denied we do the above again with added pressure.

Yes, more applications would put us in a stronger position to lobby but also I imagine more would simply be funded.

"Advocacy organizations are critically important in encouraging scientists to bring real solutions to persons who suffer with ME/CFS and to grow a powerful cohort of new investigators to apply for ME/CFS grants."

"Our long-term goal is to build a pipeline of researchers who are regularly submitting grant applications to NIH. Alas, currently the NIH receives far too few applications for ME/CFS research as compared to the burden of illness."

I think it's unlikely that we can lobby our way up to $150 million per year (an aim I saw somewhere) without more researchers. I think as well as lobbying, the ME community worldwide (made up of potentially tens of millions of individuals with the illness and hundreds of millions of family members and contacts) needs to raise as much as it can privately for research through fundraising, donating, etc. This would fund research directly and also then mean there are more researchers making applications for funding, in the US and elsewhere.

 

[Cinders66]

Should we be writing to scientists directly to inform them of ME/CFS as a worthy, interesting area they might like to consider. Isn't a problem the illness for various reasons just isn't on people's radar, is misunderstood and not respected. We could target certain people and specialisms eg the exercise scientists in the uk who we need to do research.

 

[Sasha]

Should we be writing to scientists directly to inform them of ME/CFS as a worthy, interesting area they might like to consider. Isn't a problem the illness for various reasons just isn't on people's radar, is misunderstood and not respected. We could target certain people and specialisms eg the exercise scientists in the uk who we need to do research.

What do you think, @Jonathan Edwards? Should S4ME or #MEAction UK (once it's up and running) or a group of our charities be doing this?

 

[Alvin]

Yes, more applications would put us in a stronger position to lobby but also I imagine more would simply be funded.

Exactly, we need to play this like a game of chess, a strategy for heads we win, tails we use as a tactic to get to heads.

 

[Cinders66]

I was reading about dementia research, which is really taking off for various reasons. I saw that there's been a target set for some form of disease modifying drug to be found by 2025 I think, I think that's a global target and david Cameron I think was behind world big players all rising to the challenge and quite right.
The point I'd make is that targets , whilst some hate them, can really bring vague aspirations into focus and get people motivated and unified. I think leaving ME research to largely make its own way when it's stigmatised and misunderstood has been a disaster and wonder what might happen if governments around the world , US, UK, Norway, Australia, Holland etc set a similar target for ME in recognition of the neglect previously and need to bring is into line with many other chronic illnesses that at least have something to make things not so bad.

 

[Cinders66]

Wow, that was a short reply. I agree with Sasha, the answer to you need to put in a lot more money isn't "we put in a little money previously". They had other centres of excellence they could have funded , that's why I don't buy the idea the issue in the states is researchers not applying. They still have the mindset of "foundations" and "in the future'. I very much hope #MEAction will continue their excellent lobbying, maybe the letter was so short because it's hard to squirm out of detailed , researched justified proposals.

 

[Jonathan Edwards]

What do you think, @Jonathan Edwards? Should S4ME or #MEAction UK (once it's up and running) or a group of our charities be doing this?

I don't think advocates for a particular illness can expect to persuade new scientists to study their illness. Scientists get fired up to do something new by chance observations they make or listening to presentations by other scientists. The latter has happened at meetings where new people were invited but that it involves dialogue between scientists.

The priority for me is to keep telling the scientists already involved that they need to get their act together and come up with a consensus of what can be replicated rather than, as one researcher put it, acting as independent prima donnas. The research proposals I have in the area really aren't very good and I am not surprised they are turned down.

 

[Cinders66]

I don't think advocates for a particular illness can expect to persuade new scientists to study their illness. Scientists get fired up to do something new by chance observations they make or listening to presentations by other scientists. The latter has happened at meetings where new people were invited but that it involves dialogue between scientists.

The priority for me is to keep telling the scientists already involved that they need to get their act together and come up with a consensus of what can be replicated rather than, as one researcher put it, acting as independent prima donnas. The research proposals I have in the area really aren't very good and I am not surprised they are turned down.

Isn't a part of the problem that we have few Drs/researchers involved in our field for news to travel and networking to occur and all those who don't attend the CMRC conference might well be hearing nothing, falsehood or negatives about our community. Where does a neuroscientist or immunologist or exercise researcher currently learn that ME is serious, worthy, needy and biologically based with leads from? Or where do they hear that actually exercise and CBT aren't a significant answer they've been told it is?

 

[Hutan]

I don't think advocates for a particular illness can expect to persuade new scientists to study their illness.

I think there have been quite a lot of examples of advocates for a particular illness persuading new scientists to study their illness. I can think of stories of parents with children with rare diseases knocking on doors and finding curious smart scientists to progress things. Simon M brought in Chris Ponting. Ron Davis has attracted a number of scientists to the question of ME.

Scientists get fired up to do something new by chance observations they make or listening to presentations by other scientists.

We can help put the information in front of scientists so that they make that chance observation; we can sponsor existing scientists to go to conferences where there is new blood. We can write the accounts and be the examples of people who are not neurotics just wanting to revel in the sick role so that scientists won't just roll their eyes and move quickly on when they read something about ME. We can fund grants for young scientists. We can fund biobanks that actively seek out scientists to make use of their material.

If, as you seem to be saying, a lot of the existing scientists in the ME field just aren't doing a great job making good proposals, then we at least have to try to bring in new ones who will make better proposals.

I expect you aren't meaning that advocates should just give up and watch Netflix* while waiting for good scientists to stumble across ME by chance when you wrote that sentence I quoted at the beginning of my post?

*Edit - as in watch Netflix all the time. Nothing wrong with a bit of Netflix...

 

[mango]

I think there have been quite a lot of examples of advocates for a particular illness persuading new scientists to study their illness. I can think of stories of parents with children with rare diseases knocking on doors and finding curious smart scientists to progress things. Simon M brought in Chris Ponting. Ron Davis has attracted a number of scientists to the question of ME.

Patient advocate Anne Örtegren in Sweden is another great example. She did an excellent job over the years, introduced more than one scientist and doctor from the outside to ME and ME researchers, some of which turned into successful collaborations and studies.

She did this by, for example, contacting them personally and telling them about interesting new ME studies (handpicking researchers that already had a special interest in that particular area, for example NK cells), and asking their opinion on it to start conversations and increase awareness.

She invited them to subscribe to her newsletter mecfsnyheter.se to learn more about ME.

Also, she did a lot of research to find interesting and relevant people outside of the ME community, handpicked them in order to send them invitations to ME conferences in Sweden and London/IiMEC.

She was also very successful in creating contacts between people already in the ME community: between doctors and researchers, between researchers etc; both in Sweden and internationally.

And so much more.

 

[Jonathan Edwards]

I think there have been quite a lot of examples of advocates for a particular illness persuading new scientists to study their illness. I can think of stories of parents with children with rare diseases knocking on doors and finding curious smart scientists to progress things. Simon M brought in Chris Ponting. Ron Davis has attracted a number of scientists to the question of ME.

I think this is different. Chris and Simon have been close friends for years. Lots of ME scientists have PWME as family. I entirely agree that individual PWME may be able to persuade scientists to take an interest. What I see as a blind alley is for organisations like S4ME or ME charities trying to persuade scientists to take interest. It works if it is done by other scientists - as with IimE meetings and Ron Davis giving lectures but I see little point in investing resources in trying to attract attention from scientists otherwise.

If, as you seem to be saying, a lot of the existing scientists in the ME field just aren't doing a great job making good proposals, then we at least have to try to bring in new ones who will make better proposals.

Yes, but they are going to be brought in by the existing scientists showing them something genuinely promising. If outside scientists see a group of colleagues not getting their act together they are not going to risk their careers wandering about in a fog of unrepeatable data.

Sure the charities can award grants and encourage new recruits, but that is already being done. The key there is just raising enough money to get serious projects under way.

 

[Sasha]

I think this is different. Chris and Simon have been close friends for years. Lots of ME scientists have PWME as family. I entirely agree that individual PWME may be able to persuade scientists to take an interest. What I see as a blind alley is for organisations like S4ME or ME charities trying to persuade scientists to take interest. It works if it is done by other scientists - as with IimE meetings and Ron Davis giving lectures but I see little point in investing resources in trying to attract attention from scientists otherwise.

[...]

Yes, but they are going to be brought in by the existing scientists showing them something genuinely promising.

Isn't it the scientific information that the potential new scientists get that recruits them, though, regardless of whether it comes from scientists or patients? I'm not familiar with the work of Anne Örtegren, but it sounds as though she managed to recruit scientists despite being a patient.

A couple of years ago, you and some patients produced a summary of where biomedical research into ME was at and published it in Fatigue journal. I wonder if there's a way of using that paper (or an updated version, or a document that S4ME produces) to recruit among scientists more widely.

My impression is that very few scientists within the field of ME present on ME at non-ME conferences. Ron Davis seems to be getting a lot of interest by doing that.

Perhaps a group of our scientists could co-author such a paper and share the work of presenting it at conferences within their own various specialisms?

Just thinking aloud but we need a ton of help.