Should ME organisations do more direct action to get more funding for ME research?

Completely agree with @Wilhelmina Jenkins. MEAction is not reluctant to take up outsider action. Its a question of what would drive the change we need and how do we achieve it given patients' level of debility. But we need to do something -we can't wait for NIH and CDC to eventually get there, especially given that many of the clinicians are nearing retirement

 

I feel embarrassed for starting this thread without specific enough ideas for positive actions we could take.

I just am pretty desperate and generically frustrated with the whole situation.
I guess this process (of initially having ideas but then crashing and being too brainfogged to present a coherent critique) is sort of a microcosmic example of why our movement is so slow to succeed

 

I relate so much

 

@debored13 I'm confused about your thread. Most of the ME activism is done by very sick volunteers. A lot of the ME organizations only consist of sick volunteers and have no paid staff. As an example #MillionsMissing Germany is mostly run by bedridden pwME.

Are you aware that Jen Brea has done interviews with Peter Staley to talk about effective ME activism? That AIDS activists took part in the #MM protests and that #MEAction has articles and videos on the topic what to learn from the AIDS movement?

A shortage of ideas is truly not the problem. You can also be assured that every volunteer groups gets daily mails with "ideas" and demands like yours.

Demanding of equally sick volunteers to execute your ideas is not going to be enough to change things. The organization for #MM 2020 has already started. Many more actions are being worked on and very sick pwME are fighting everyday for all patients from their beds. To be blunt I would suggest you start with working on concrete action yourself if you're as desperate for change as we all are.

 

I said repeatedly in this thread that I am appreciative of the work MEAction does. One of the reasons i wanted to talk about whether they should do more radical direct action is that ive gotten the impression that they have gotten some negative feedback when doing more radical protests (like the Per Fink one). A) im not exactly "demanding" anything and have zero leverage and B). I'm working as hard as I can to aurvive while homeless and also findinf the time to brainstorm. How many times do I have to say I understand the obstacles that most people working on this stuff are very sick? However there are surely some staff at MEActiom and other orgs that are not sick, and healthy allies that can help plan actions and execute them. This is a thread on a forum not a formal letter yet. Hence just throwing stuff at the wall to see what sticks.

 

hello,
Why do you think your main activists are bedridden , given bedridden patients make up only a portion of the 25% severe who are already a minority ? Do you think that those really keen on faster action also happen to be the ones more sick. Perhaps finding a way to reach/ inspire the mild-moderate and healthy friends and family more is the way forward, I don’t know how though. We don’t want sick people making themselves sicker.

I appreciate the point about the burden of organising events being off putting or even a risk to higher functioning people with ME, but the more people involved the more it can be shared Out, and it’s protest attendees, campaigners of any form and petition signatories we are also lacking, all over the world, which doesn’t ask so much of individuals and they have co-ordinators now but there still isn’t the interest which is baffling. I could have attended events for a short time when I was mild or moderate, now very severe it’s impossible to do anything much.

I personally welcome a debate thread on this and thought the focus was speaking about America and re the NIH, where some of the #MM leaders Jen brea & Jamie strong I think, are not working from beds or even homes afaik, thankfully. I thought that it was broached as “ can we talk about, what are people’s thoughts” so in a sensitive way.

 

I agree with everything you've said. I don't think my original concerns were expressed in an insensitive way even if they are too vague. The thread was originally my response to a petition for MEActiom to be more "evidence based". And i feel lile MEAction gets a huge amount of criticism from every direction, some of it quite petty , so I'm confused that 90 percent of the criticism seems to not be expressing what i think is the most salient point that some organization needs to become more radical

 

Now I’m confused! What @Michiel Tack put together wasn’t a petition, as far as I understand. It was a response to ME Action’s call for community response to its Values & Policies Initiative. Anyone was welcome to write about a value that should be important to ME Action - in this case, scientific rigor. So @Michiel Tack was doing exactly what ME Action asked for. Not a criticism, but a contribution.

The same would be true for a submission about increasing outsider actions. Anyone could write it up, get others to sign on, and submit it for V & P. It would be welcomed and considered. If you don’t have that much energy, you could write a comment at the end of the Inside/Outside editorial.

https://www.meaction.net/2019/10/03...st-shout-in-the-streets-and-sit-at-the-table/

 

Here's a quote from Dr Vicky Whittemore (NIH) at Invest in ME Conference (2019):
"advocacy groups --- that's what makes the difference -
- when they [elected representatives] hear that, from people with the disease -
- advocates -- telling them [elected representatives] what's needed is really what makes the difference"

I think some of this may be down to linking up with those who how to influence the "executive" bit of Government which controls funding.

I've been helping with this European Union petition no 0204/2019

We haven't translated positive feedback into funding for research yet. The barriers you highlight "no set aside funding" competition with better understood diseases (MS etc.) and diseases that have more public support e.g. Lyme (Lyme is a real disease after all and anyone could catch it - not like ME!).

I'm interested in the strategies others identify i.e. to get funding for research - hence I'm reading this.

 

In a large organisation, US Government --- Congress --- there may be people with a family member with ME. If you take a sample of people involved in ME then you'll see a disproportionate number have a family member with ME. So those with some link to ME are one group who may help. Another may be those, e.g. member of Congress, with a track record of being active on health issues.

I'm in the European Union (only just - I'm in the UK) and do some lobbying with MEAction - EU petition no 0204/2019 etc.

 

hmm.

[note: the following is off the cuff. for health reasons i
don'thave it in me at this time to complete the more
polished blog post on this i haev in my backlog. also i am
not a lawyer.]

did nih tell you this too? i believe nih's claim is misleading.

they told me approximately the same in response to my open
letter to francis collins.

however, they never provided a citation for the rule. they
never gave any indication of where or when it came from.
they also never said what specifically it applied to.

they never said whether they were denying on a technicality.
if so, then the request could be modified? they paraphrased
it so you can't search for this phantom rule.

yet they implied, basically outright stated (because it was
a response) that it applied to the case in question. which
i do not think it does.


imagine nobody knew about ebola and it swept through the
eastern seaboard, but the media focused on justin bieber.
is the executive branch TRULY PROHIBITED from saying to
congress "there's this virus, and it's kind of a problem"?


so i had to talk to a lawyer and fish around on their ethics
website to find out what they were talking about.

I asked the lawyer whether agency heads can tell Congress
what things need scientific research.

I was told that Congress's power to investigate is
coextensive with its power to legislate. This apparently
means yes, Francis can tell Congress so. fwiw.


on the question of the nih rules, it turns out, according to
nih's next letter, that i guessed correctly, and the rules
are described here:

[https://ethics.od.nih.gov/topics/lobbying.htm]

according to that email, "That site interprets the
Anti-Lobbying Act, 18 U.S.C. §1913, to help NIH/HHS
employees understand the law and which activities they are
allowed to engage in."

please check it out for yourself.

to me, it seems intended for things like sending out
pamphlets telling folk to contact their congressmen. WE ARE
NOT ASKING FOR THIS KIND OF THING.

instead, our case is more like the ebola thing. it's part
of nih's job to inform congress. that is why it gives
regular testimony.


so if there is a policy that says "don't tell congress
anything about m.e." implicitly or explicitly, written or
unwritten, then we are asking for that policy to change.

and it seems that this does not violate anti-lobbying rules. and it
shouldn't require an act of congress to change that policy.
nih should do its job.

(substitute "position" for "policy", if you want to use
nih's language.)

similarly for a lack of policy. the lobbying and propaganda
rule does not prevent them from deciding to tell congress at
appropriate times about a serious disease. [perhaps this includes regular testimony.]


to the contrary, the rule says a bunch of things like
“Direct executive branch communications to a federal, state,
or local legislative body through proper official channels
are permitted.”

it even says "While communicating with the public,
Department officials may say, ‘We need your support on this
matter..." (my quoting might be off as i am going from
nih's second letter.)

obviously department officials can't say stuff like contact your
congressmen.

WELL DUH. WE ARE NOT ASKING FOR THAT. it is misleading of the nih if they are pretending that we are.


at this point i think nih leadership is having a lot of fun
giving us the runaround instead of doing their job.


what have you heard about cdc in this context?

the cdc/phs went around congress lobbying for the tuskegee
experiment to continue. although that was a while back, of
course, so possibly before the anti-lobbying act.


wish i could post my followup.

tldr: i would not trust the nih leadership on this at all.

 

There’s a difference between reporting on particular diseases and lobbying for them. If Congress calls NIH in to talk about this or any other disease, they would, of course, do so. But that is different from requesting funds. Congress gives NIH a bucket of money. They expect them to decide what to do with it.

I thin that our best bet is working on Congress to pressure NIH and not the other way around.

 

In my personal experience from being involved with several patient groups, it's often the severe patients who do a lot of the volunteer work from bed. From my experience it's possible to mobilize some healthy allies and milder pwME to show up at single events once a year but it's rather rare that they do the day-to-day work and drive things forward. Not sure why – probably severe pwME are most desperate for change and have already lost everything – while milder pwME maybe have to spend their energy clinging to a job or to the remains of a life and healthy allies of course also have their full lifes and jobs. This is mostly from a German perspective where we have small ME organizations with no paid staff but from contact to international advocates I guess it applies to a lot of ME activism (even if in other countries there are some paid staff members).

Agreed! It's really hard to mobilize participation even with little things.

(bolding mine)
That's the main problem in my view, as there is no "they". It's only "us" the patient community (and the organizations are also part of "us" as they mostly consist of patients) and if we want change or activism to be different we have to get involved and work for it. Did you check out the #MEAction staff list on their website? Surely seven paid #MEAction staff members (most of them with ME and some of them part time) who live in different states and countries can't do actions and solve the decades old ME problems for us. There are many ways to get involved to drive activism forward, also from bed.

 

I have a peripheral involvement in Government policy [a devolved UK regional assembly - Northern Ireland]. I've watched a senior public official, requested to appear before a committee (comprised of elected representatives), being asked to look at funding X--. I think that generally helps to get X moved up the priority list. So basically I agree with your suggestion i.e. get the elected representatives to put pressure on the NIH.

The key thing here is some diseases are poorly funded relative to their impact (roughly 1 million people with ME in the US - approx. 25% house bound/bed bound). AIDS is funded way above the disease impact. In the EU (UK is still in EU I think) Lyme does much better than ME. The question is how do we get political influence, so that we can access appropriate levels of funding?

I lobby with ME Action in the EU by the way (volunteer).

Possibly this is a chicken and egg kind of problem. NIH won't commit bucket loads of cash, since the cause of the disease(s?)/disease pathway isn't known, and we need funding to identify this. Possibly some of the small studies funded by Solve ME/CFS or OMF etc. may identify this. Once you have a disease pathway then others will come on-board e.g. NIH funding may increase and drug companies may be interested.

 

Really glad to see this discussion going. I think it's a super important topic and have been meaning to weigh in for a while, but have so much to say that I've been putting it off til I have the energy to write everything out... which of course means I'm still waiting. You all know how that goes!

Posting now to just briefly say that the plan for the #MEAction campaign #NotEnough4ME is to use every tool at our disposal, including direct action, to force a massive shift in the NIH's approach to ME. I've been helping plan for this campaign on and off (emphasis on the off, due to some long crashes) since the NIH conference last Spring, and due to my prior activism experiences, I truly believe that the escalating collective action campaign we're planning is the best way to make massive change happen quickly.

So for everyone in this thread who has been thinking that we need to go bigger and bolder but hasn't known how-- this is your chance! Please join in the fight however you can, as our power and scope will depend directly on how many pwME and allies get involved in the campaign.

#MEAction is having a "closed-door" community call at 3p ET / 12p PT TODAY (Tues 11/12) about the next steps in the #NotEnough4ME campaign. (Sorry for the late notice!) We'll both be sharing how to participate in our first action (will be pretty easy to do) and discussing the campaign as a whole, including how people can get involved in brainstorming, strategizing, or planning for the campaign. There will be a dedicated Q&A period in the call, so please join even if you have some questions, concerns, or skepticism.

Anyone who sees this message in time can sign up via the form below. (No worries if the timing doesn't work-- we'll make a recording of the meeting available to people who pre-registered.) If you see this message after the meeting or would prefer written instructions, you can just email "I'm in" to ben@meaction.net (or let me know here).

Who here can help out with either this first action or with the campaign in general? Looking forward to working with you to bring the fight to the NIH!

[https://docs.google.com/forms/d/e/1...jj5SaySw-ZzYSNHi-ZcBjE7S5LPudNtPvrWf1BA8vQck)