What common goals can everyone work towards, regardless of their view of the IOM report?'

[Sasha]

Using the same subject line may result in spam filters dumping those emails

That's a point - but unless they've all got the same subject line, they're not going to look very campaigny, I think. I wonder if each intended recipient should get a message at the beginning of the campaign asking them to check their spam file? Or do some filters actually stop them getting through completely?

Would it be worth specifying biomedical research (to minimize the psychosocial stuff)?

Yes, definitely.

 

[halcyon]

There would be a number of potential good fits (infectious disease, neurology, rheumatology, immunology, hematology...) but I think we can't foist it on a specialty or else we'll be left with a specialty where we aren't wanted, and there is little worse than being unwanted.

I think infectious disease is the most obvious choice, given all the evidence we have to date. It's not surprising that a lot of the top ME doctors are ID docs by training, or at least have a good background in ID.

One of the problems with this specialty though is that most ID docs I've looked at here in the US only seem interested in seeing HIV and hepatitis C patients. Not surprising I guess given that these are the only two major infectious diseases left in developed countries.

 

[WillowJ]

Do we need to specify how they should use the money, or just ask for the money? I don't think it's for us to come up with an entire financial plan, is it? Or is it? Maybe those are famous last words of mine above when I said I was fairly familiar with the issues...

I think having at least a general idea of how it would be spent would do two things:

1) it would show that we are organized (supposing we can agree on a simple outline)

2) Congress might possibly be more willing to fund something if they had some idea how stuff would be spent, rather than funding a "black box".

If you look at the Alzheimer's plan, it had specific, actionable points that could be checked to see whether that's where the funds were really going. Of course, they had an HHS attorney to write it for them.

Additionally, it could highlight the overwhelming need for research. "They need what! That's kind of, well, basic; we thought everyone got that."

But it might not be essential.

 

[WillowJ]

Regarding email campaigns, not sure about subject lines (maybe if we suggest subject lines, we would need one for each variant), but the first line or para should be where unique text is put, otherwise no one will read the entire thing but just assume all of them are the same. They should log it, though.

I think if they are getting multiple mails about the same thing, maybe it doesn't matter whether it looks "coordinated" or not; they will get the idea that it matters to a lot of people.

Having some unique text at the start should make it count more, as they will figure people put some effort into it.

 

[oceiv]

I'm happy to see that there's interest in going forward with this new strategy.

On the spam issue, yes I have heard before that congress members will disregard form letters and send them to spam. I don't know the frequency of how often they do so. As @WillowJ and @Denise said, varying the intros and subject lines can help get around this problem. When I contact congress, I usually am responding to an organization's call. They take care of the details. But one time, during a grassroots call for action, the originators asked for original letters with unique subject lines. These emails were all on the same broad issue, with sub-issues raised as each person liked. I wrote one such letter. That was a very different kind of advocacy, although the general principles may apply. What we could do is come up with a few intros.

At the same time as @Sasha said, cognitive problems do make it hard to write (been there often). The Lego method of building a letter (great analogy!) needs to make it simple for patients, friends, family to choose their preferred Lego pieces. Perhaps something like this:

How to build your letter

Step 1: Add your local congress members to the addressees list:

There are a few sites on which people can find their representatives. Does anyone know them off-hand or want to google them? We can list one in our instructions.
​

Step 2: Choose your intro from the intros below. If you can write a unique sentence to start your letter (even if brief), we strongly encourage you to do so to circumvent congress members' spam filters. Then, you can add our intros

Intro 1

Intro 2

Intro 3
​

Step 3: Pick your goals from our list of common goals

(List of goals, with bolded headlines (as @Sasha suggested))

Goal 1

Supporting text​

Goal 2

Supporting text​

Goal 3

Supporting text
​

Step 4: Decide if you want to use non-controversial quotes from the IOM report or not use quotes.

As a group, we have decided not to take a position on the report. Please adhere to this principle whether choosing to use report quotes or not.

Quotes examples

No quotes examples.
​

Step 5 : Sign your name, add address and email to targets

Sign your name
Add your Address
Email your newly-completed letter.
​

Thanks for joining our advocacy action!

The number of combinations people could potentially choose, might get us enough variations to circumvent the spam/lack of attention to form letters problem. We could then have our example letters in a second post.



As far as a unifying factor, one suggestion is to give our advocacy action a name and put the name in the text of our letters, like so:

To: senators and congress men/women

Regarding: ME/CFS Equality

Text of Letter

Signed,
Name
Address

But we would ask people to choose their own email subject line. Or we could let the similarity of our letters speak for themselves, as @WillowJ said.

​

 

[Sasha]

That looks good, @oceiv.

@oceiv, is the next step for individuals to volunteer to write individual demands (or lead small teams to develop those demands that are still a bit unformed)?

Do you agree that this is the next step?

If so, do we need a list of the points we wanted to make and see if there are volunteers for each point?

 

[oceiv]

Yes, I do agree. I was resting before making that next post. But thanks for shortening it.

We also need volunteers to do the following:

A few intros. All with same theme. Equality/parity is good as it unifies all of our goals. One/two sentence(s) about why this letter is necessary.

names and email addresses for health agency heads

site to look up people's local congressional representatives

quotes from IOM report - not the name or criteria, no positions on the report

quotes from Montoya and non-IOM sources

If we choose an advocacy project name for the "Regarding" line of the letter, we need choices. Unless we just like "ME/CFS Equality" (one thing solved, if so).

Goal wording (Not goal debate)
​

General points, don't argue about the goal selection. We broke down here before. Let's avoid that cycle, again, now that we have a Lego approach. Rather, select a goal for which you would like to write suggested wording. Please keep our discussion limited to our current approach, not previous or current debate.

Keep everything as concise, specific and with as strong language as possible. Leave as little wiggle room as possible.

We are aiming for a one-page letter, if possible. At most 1 1/2.

I will add links to recent goal lists here in this post. One note that I would add (I can't remember if this was mentioned earlier or not), is that we should try not to duplicate or be redundant of ME/CFS org's campaigns. If there are other advocacy projects and people would like to support those campaigns, they can. Our efforts should be original and therefore worth patients spending our precious energy.

These all are old wording. I decided to do a list plus links. I didn't want to refer back to certain discussions

My revised goals:

• We need more research funding from our governments. This research must have well-defined cohorts. The research must include a broad range of patients, including those who are housebound and bed-bound

• We need a fundamental change in the overall policy of governmental engagement with the patient community. A first step in fixing this broken engagement model is for the broad patient community to have input into what happens next.

• Access to care: no patient should be refused health care (related to the illness or not) because they have this disease.
  
  The wording needs to be very precise. We are talking discrimination here. Physician groups will not be happy with this because they want a way out, they want the ability to refuse these patients because they don't know enough about the illness. I know, I've been there.

@aimossy had suggestions for those first two goals

SCMI's goals/@Sasha (See my question on whether it would be redundancy to have the same exact goals?):

1. More funding ($250k)

2. Removing institutional/structural barriers to research, so a more appropriate research home than the Office of Research into Women's Health (e.g. NAIAD, which covers immunology, or NAIDS, which covers neurology).

3. Better education for doctors so that patients can get care.
​

@Kati 's goals:

1) funding of 100-200 millions in funding for biomedical research per year for the next 10 years.
2) assign a medical specialty to the disease within 3 years.
​

@medfeb 's goal:

a fundamental reboot in all facets of U.S. federal public health policy toward this disease. (Note, I think this relates to my health agency engagement goal, which I took from an earlier @medfeb post).
​

Most of these overlap, at least on certain goals. If I missed yours, post them.

​

Our last goal list. We whittled it down (above). Also note, that many of the listed goals are internal group matters.

The suggestions for the research goal were: well-defined research subjects, sustained funding, parity for similarly-disabling conditions, a specific amount backed up by an articulated rationale for the number, biomedical research. Suggested by @Sean, @Denise and many others

That's all I can address for today.

​

 

[Sasha]

Yes, I do agree. I was resting before making that next post. But thanks for shortening it.

​

If we choose an advocacy project name for the "Regarding" line of the letter, we need choices. Unless we just like "ME/CFS Equality" (one thing solved, if so).

I think that's the core concept so let's go for something like that - but I'd suggest 'Equality for ME/CFS patients' because it's immediately clear what that means, and it's still short.

I will add links to recent goal lists here in this post.

One note that I would add (I can't remember if this was mentioned earlier or not), is that we should try not to duplicate or be redundant of ME/CFS org's campaigns. If there are other advocacy projects and people would like to support those campaigns, they can. Our efforts should be original and therefore worth patients spending our precious energy.

I don't think that this is what you meant, but I think that some of our points will inevitably be redundant with other orgs' campaigns (everyone is pressing for more funding) but I don't think that's a problem. The more people saying the same thing, the better. We're pressing for equality, and I think we should shock our recipients with the list of the major areas where we lack equality (research funding, treatment options, care, etc.).

The suggestions for the research goal were:

well-defined research subjects, sustained funding, parity for similarly-disabling conditions, a specific amount backed up by an articulated rationale for the number, biomedical research. Suggested by @Sean, @Denise and many others

Thanks, all good. I'm still willing to work on the research funding goal - @WillowJ, would you work with me? - if others volunteer to pick up the other goals.

I also volunteer to do the intro paras.

That's all I can address for today.

You've done a lot!

 

[Sasha]

I will add links to recent goal lists here in this post.

I've gone back as far as p. 10 and the goals in play seem to be (text from various sources and some comments from me):

(1) Increased research funding
We need more research funding from our governments. This research must have well-defined cohorts. The research must include a broad range of patients, including those who are housebound and bed-bound

(2) Better engagement with the community of patients
We need a fundamental change in the overall policy of governmental engagement with the patient community. A first step in fixing this broken engagement model is for the broad patient community to have input into what happens next.

(3) Better care for patients
We need better patient care for all patients, including for severe (housebound and bed-bound) patients who often have no care. This care must not include treatments that worsen the patients' condition. [Better education for doctors might feed into this proposal.]

(4) ME/CFS should move out of Women’s Health
Removing institutional/structural barriers to research, so a more appropriate research home than the Office of Research into Women's Health (e.g. NAIAD, which covers immunology, or NAIDS, which covers neurology). Solve is demanding this and it seems to be crucial to progress.

(5) Testing/validation of the SEID criteria is necessary
There was a fair amount of disagreement that this one fit in with the general focus of things – and it doesn’t clearly fit the issue of equality for ME/CFS patients – but given that we’re now going Lego, maybe that doesn’t matter. People can pick and choose as they wish.

Have I left any out? Any volunteers to write a short para on any of them?

There's some very good discussion on each throughout this thread that should help put stuff together.

In general, I think each goal statement needs to say:

• in what way ME/CFS currently doesn't have equality with comparable diseases (for funding, for example, we're underfunding by a factor of 50, as shown by NIH's own funding tables);
• what exactly we want done to fix the problem and whose job that is (if possible - we've just got to do our best). So we can't just ask for 'better patient care' - we've got to say what that consists of and how it could be delivered.

Takers?

 

[Sasha]

Jen Brea just tweeted this:

Hatching plans for #May12? #MEAction is almost ready for beta launch. Looking for good projects to host or promote.​

 

[oceiv]

Besides helping to prepare our letter, I thought of a way international patients could participate. Our articulation of how things are currently unequal for ME/CFS patients could also serve as a public awareness opportunity. If we have international patient input on how these goals are currently unmet, the results (hosted in a thread here) could serve to educate friends, family, even maybe, maybe doctors. If promoted well, this could be a great education opportunity and could work hand-in-hand with our congressional advocacy.

Jen Brea just tweeted this:

Hatching plans for #May12? #MEAction is almost ready for beta launch. Looking for good projects to host or promote.​

How cool would it be if our project was ready to be promoted by #MEAction? Some good motivation.

I think that's the core concept so let's go for something like that - but I'd suggest 'Equality for ME/CFS patients' because it's immediately clear what that means, and it's still short.

I like this phrasing or Equality for ME/CFS (#E4MECFS). How about everyone else?

I don't think that this is what you meant, but I think that some of our points will inevitably be redundant with other orgs' campaigns (everyone is pressing for more funding) but I don't think that's a problem. The more people saying the same thing, the better. We're pressing for equality, and I think we should shock our recipients with the list of the major areas where we lack equality (research funding, treatment options, care, etc.).

Good points. What I meant was, (using an analogy) let's say ourselves and an org are both baking cupcakes. But our cupcake shop is on the edge of town. The org's cupcakes are on the main street in town. People can get to their cupcake shop easily. But, shoppers need to travel and make an effort to get to our shop and buy our cupcakes. In order to motivate them to buy our cupcakes vs. center of town cupcakes, we need to make a better (not the same exact) cupcake. Maybe our cupcakes are gluten-free, organic and use all natural ingredients. Now, they're more worth the travel. Likewise, our research goal stresses biomedical, sustained funding, comparable to similarly-disabling disease. Patients have to make a little effort. But, our research goal is "a better cupcake," as all our goals should be.

I'm still willing to work on the research funding goal - @WillowJ, would you work with me? - if others volunteer to pick up the other goals.

I also volunteer to do the intro paras.

If you would like to go ahead with this, go for it.

I'm wondering how others feel their own strengths, skills or interests in certain goals could contribute to getting our letter done?

 

[oceiv]

I've gone back as far as p. 10 and the goals in play seem to be (text from various sources and some comments from me)...

...Have I left any out? Any volunteers to write a short para on any of them?

There's some very good discussion on each throughout this thread that should help put stuff together.

In general, I think each goal statement needs to say:

• in what way ME/CFS currently doesn't have equality with comparable diseases (for funding, for example, we're underfunding by a factor of 50, as shown by NIH's own funding tables);
• what exactly we want done to fix the problem and whose job that is (if possible - we've just got to do our best). So we can't just ask for 'better patient care' - we've got to say what that consists of and how it could be delivered.

Takers?

Thank you for compiling the older goals in addition to the list above. Your question approach is a valuable suggestion. People do not need to worry about getting the grammar or everything perfect if they adopt a goal to prepare for the letter. We need the ideas. An individual approach to adopting and fleshing out goals and the current state of things wrt each goal would be the quickest way to get us to a finished letter. Simultaneously, I'm going to try a group approach:



Current topic for input:

Applying @Sasha 's questions directly to the research and government engagement goals, how would people describe our current lack of research and government engagement? We can use these descriptions directly in the letter.

Goals under discussion - Need wording to explain current, unequal situation:

We need increased, sustained, biomedical research funding from our government.

We need a fundamental change in the overall policy of governmental engagement with the patient community. A first step in fixing this broken engagement model is for the broad patient community to have input into what happens next.

• For the research goal, it seems we already have a lot good suggestions for fixes. Originally, finding biomarkers was suggested. Anything else we're leaving out? But we do still need a clear way to articulate the current situation.

• For the engagement goal, what is the best way you all have described the ME/CFS research situation to uninformed friends and family? After all, our congress will likely not be informed on what's happening now with ME/CFS. How best and simply to describe what is currently a really dismal situation, with regards to how the government health agencies communicate with patients? How best could a broad-range of patients have input into health agencies' next steps on ME/CFS?

 

[Sasha]

I like this phrasing or Equality for ME/CFS (#E4MECFS). How about everyone else?

I like that too.

Good points. What I meant was, (using an analogy) let's say ourselves and an org are both baking cupcakes.

I think that what is inherently unique about our cupcake effort is that we're organising a mass campaign where patients write in. Other orgs might have similar goals (research funding etc.) but I don't see anyone giving patients the opportunity to join a mass campaign. That's why I think it's fine (indeed, very desirable) to have the same demands.

Still not sure if we're talking at cross-purposes! I'm not convinced I'm being very clear. :thumbdown:

If you would like to go ahead with this, go for it.

I'm hoping some others are going to rock up and offer on the other goals...

Might work on something in the meantime...

 

[Sasha]

How cool would it be if our project was ready to be promoted by #MEAction? Some good motivation.

Hi everyone! We are getting *very* close to launching a beta version of the‪#‎MEAction‬ website.

We have selected two tools for our initial launch: a petition tool and an events tool. If you have any advocacy plans in the works for the coming months that might make good use of these tools, please do let me know.

In addition, we'd love to cross-promote any actions you might be planning, whether or not they are a petition or an event – PM me!

 

[aimossy]

@Sasha @oceiv I was just about to post about that ME Action Network posting re website platform. Great you spotted it.
I think it is important to highlight about equality and parity with all other illnesses, regardless of mental health label or otherwise!

 

[Sasha]

@Sasha @oceiv I was just about to post about that ME Action Network posting re website platform. Great you spotted it.
I think it is important to highlight about equality and parity with all other illnesses, regardless of mental health label or otherwise!

I agree - though we'll be rejecting the 'mental health' label! I wouldn't want us to be taking an, 'even if we've got a mental health problem we still want parity' because we don't have that problem and won't be saying that we might (I don't think that was what you were suggesting, though).

 

[aimossy]

I wasn't meaning include that @Sasha just making a point unclearly that the equality/parity with other illnesses regardless of label is horrendous, we have been so marginalised that even when classed in Mental Health we were/are so marginalised that compared to other mental health illnesses our funding is horrendous. It's like a serious bioethics issue. It shouldn't matter where you fit so to speak, it's about the suffering and functional loss.

 

[Sasha]

I wasn't meaning include that @Sasha just making a point unclearly that the equality/parity with other illnesses regardless of label is horrendous, we have been so marginalised that even when classed in Mental Health we were/are so marginalised that compared to other mental health illnesses our funding is horrendous. It's like a serious bioethics issue.

I see what you mean.

Yes, the whole situation is a bioethics train-wreck.

 

[aimossy]

My brains too wrecked for threads at the moment

 

[Sasha]

@Jonathan Edwards - I doubt you've been following this whopper thread but we're trying to refine some goals for US PWME to batter Congress/HHS with in a mass email campaign.

One of the goals relates to where ME should be parked. Currently, it's within the Office for Research on Women's Health, which is for diseases that 'primarily affect women'. This move was widely seen by patients as a disaster (here's the history) and patients and organisations have been trying for years to get it moved to a different part of HHS.

The Solve ME/CFS Initiative recently called for ME to move to NAIAD or NAIDS (immunology or neurology). But in the discussion on this thread, we've been wondering whether there's enough indication of the core problem to move us to any specific group and even if there was, how that's done. Can we be foisted on a speciality that doesn't want us? Do we need a new specialty? If so, how can one be created?

We have a similar issue in the UK, of course - no speciality owns us and so we can't get specialist care.

What do you think would be a good thing for us to ask for, to get ME out of Women's Health and into somewhere else? I think we could do with some medical input from someone who knows about this stuff (you!).

Even if this is somewhat premature it seems such a crucial issue in the poor treatment of ME by the HHS that it seems highly desirable to get the ball rolling somehow.