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

WillowJ

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The 5-digit zip is usually all a person needs to find their representatives. But in some cases the additional 4-digit code might be needed, if your zip code is split between districts.
I think needing the 9-digit zip would be most normal for urban and suburban locations; not needing it would be more possible in a rural location.

Your own would be on a piece of mail from a large company, or you could use this:
https://tools.usps.com/go/ZipLookupAction!input.action
 

oceiv

Senior Member
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259
@aimossy When contacting U.S. representatives, it depends. If you're trying to get your state reps to vote for a particular bill already proposed, you would target all three of your reps. If you're trying to get one issue passed, you might target reps friendly to that issue. We're trying for a broader awareness approach, so I've suggested starting with majority, minority leaders plus local reps. Edit: We could provide links to majority and minority leaders, but people need to look up their local reps.

@Sasha We do need to ask people to send to multiple representatives. Even just targeting majority and minority leaders is 4 people. If you look at Bob Miller's recent email campaign on HR (FB?), it targets many representatives at once. Targeting one senator or congressman/woman would not get anything done. Especially, on a issue this complex.

As far as targeting, what we discussed was targeting both congress and health agencies at once. NIH cannot change its own funding levels. It can sometimes rearrange funds, direct them, etc. But, congress has to allocate more money to NIH, which NIH can then spend. For example: Right now, there is an approx, 10% cut to each and every government program, except defense and some benefit programs. This cut happens every year for a specified number of years, unless congress does away with the cut. These are some of the examples mentioned by myself and others earlier in the thread. The HR article you mentioned above and I referenced a few times lays out how even if people within a health agency want to help us, their hands are tied without congress.

Thanks for the work on intros.

@WillowJ I was afraid of that email situation, though I know when I sent the letter for the unrelated issue, it was to an email address, not a contact form. It was a grass roots campaign and nobody had connections to get email addresses.

I think that this lego approach is very clever and considers the variance in patient views. It would enable something to be done regardless of differences. Someone highlighted in thread earlier that many saying the same thing in similar themes is just as important. It gives voice to all.

I think this has come about to basically start to develop an advocacy tool that is pretty friendly for all to use. Taking a lot of work out of the difficulty factor and energy factor. This idea is in need of a platform once it is more developed and I think that The MEAction Network platform could really enable this whole idea.

@searcher just tagging you to let you know about this thread.

Thank you. You hit the intent and possibilities straight on-the-nose. The platform suggestion sounds good. I don't know who searcher is, but thanks.


@WillowJ I tried a few zips in my area, all were fine with 5 digits. I'm not in a rural location. Places like NYC have more people in one zip and probably have more than one rep/zip. Plus, there are the weird gerrymandered districts. I guess we could recommend trying 5 first and adding if you need to do so. Edit: Either way is fine with me. Just trying to reduce the steps people need to take. Thanks for all your knowledge on these subjects.

Edit: It's late. Lots of good conversation! Look for added links in this post. Goodnight.
 
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Sasha

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@Sasha We do need to ask people to send to multiple representatives. Even just targeting majority and minority leaders is 4 people. If you look at Bob Miller's recent email campaign on HR (FB?), it targets many representatives at once. Targeting one senator or congressman/woman would not get anything done. Especially, on a issue this complex.

As far as targeting, what we discussed was targeting both congress and health agencies at once.

I agree about targeting multiple reps (both houses of congress) - but we're asking people to do something, which is why I think agencies need to be cc'ed rather than being the direct recipients. We're asking congress to apply pressure to the health agencies to do X, Y and Z. We can't just say, 'we want more funding'. We have to specify an action. For congress reps, that's putting pressure on agencies. For agencies, that's agreeing to specific actions, and we're asking for a range of things, actionable by different agencies. I don't see how to address all those different players in the same email.

Most people (including off this thread and in other contexts, such as on HR, various prominent individuals and so on) have said that we need to target Congress because we've endlessly asked HHS for things and they haven't been granted. So I think it makes sense to target Congress and cc the HHS (and other agencies relevant to the actions we want).
 

Sasha

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OK, so here's a draft of the IOM-mentioning version of a possible introduction to the letter. @oceiv suggested a couple of sentences only but I think we need more substance if we're going to be convincing to congress reps who don't know anything about the disease.

I made this as short as I could while still covering the basics and it's still 180 words long. We have to bear in mind that if we're making multiple demands, even if we can explain each in only 200 words (the unequal status quo plus what exactly we're asking for to fix it), we could easily end up with a 1,000 word document, which would take some reading.

We need (I think) to keep things short and not load on absolutely every little detail that we want - especially things that we're not going to be able to control. Realistically, I think we can only do 'big brush' asks.

I've made the first line of this personalisable (which is why I've put the town of residence in early) to get past spam-catchers.

We don't all have to agree on this - after all, we're going Lego and anyone can edit their own letter - but if there are specific things that lots of people agree need changing I can do an edit of the basic text, and once that's in good shape, then do a version that doesn't mention the IOM report for those who want that.

Here's the draft:

Draft introductory text (IOM version)

To: XX

I am a resident of [town] and have been [housebound/bedbound/sick] with ME/CFS (myalgic encephalomyelitis, also known as chronic fatigue syndrome) for X years.

I am writing to you, as my representatives in Congress, to ask you to demand that government health agencies treat my devastating, appallingly neglected disease on an equal footing to others.

The prestigious Institute of Medicine, commissioned by the HHS, NIH, AHRQ, CDC, FDA and SSA, recently published a report on ME/CFS. The report’s primary message was that “ME/CFS is a serious, chronic, complex, systemic disease” and not a psychological illness.

The report noted that ME/CFS patients are “more functionally impaired than those with other disabling illnesses, including type 2 diabetes mellitus, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease”.

An estimated 25% of patients are housebound or bedbound. Many have been sick for decades. Many are children.

Along with my fellow patients, I need your help to get a fundamental reboot in all aspects of US federal public health policty towards this disease.

Please demand the following from the HHS to get equality for ME/CFS:​
 

Sasha

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And here's a draft (IOM version) of the request for more funding.

Biomedical research funding of $250 million per year
As the IOM report stated, although ME/CFS affects over one million patients in the US, with annual economic costs of $17 to $24 billion, there has been “remarkably little research funding”.

For years, ME/CFS has received a paltry average of $5 million annually. In 2014 it was, as usual, near the bottom of the NIH funding table at 231st out of 244 disease categories. Hay fever receives more money.

Because of this long history of catastrophically low funding, there has been very little research; the cause of ME/CFS remains unknown; there are no biological markers to diagnose the disease or measure progress in clinical trials; there are almost no clinical trials; there are no FDA-approved treatments; and top-level scientists who are ready to go with crucial research programs are unfunded.

I ask you to demand of HHS that ME/CFS gives biomedical research funding parity with similarly disabling diseases such as lupus and MS, which receive fifty times as much research funding per patient per year ($250 to our $5), despite affecting fewer patients put together than ME/CFS.

Parity would be $250 million a year ($250 per patient for a million patients) and would allow an aggressive program to understand all aspects of the disease. NIH budget cuts are irrelevant: we are asking for a fair share of the pie, regardless of the size of the pie.

HHS must make Requests for Applications (RFAs) in all areas of ME/CFS biomedical research, including for Centers of Excellence for treatment and research; biobanks; studies of incidence, prevalence and mortality; the disease’s natural course; biomarkers; biopathology; studies leading to drug treatments; and indeed all the basic research that should have been done decades ago.​
 
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Forbin

Senior Member
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966
Just generally, in the US is it better to target any specific congress people or would it be best for people to choose from a listing that has their local representatives? I guess people would send like has been suggested to the health agencies concerned as well?@searcher just tagging you to let you know about this thread.

The NIH is overseen by committees in both the House and Senate.

In the House, it's the House Energy & Commerce Committee Subcommittee on Health. Here is a list of the members: http://energycommerce.house.gov/subcommittees/health#members

In the Senate, it's the Senate Committee on Health, Education, Labor & Pensions. There is a list of the members on the right hand side-bar: http://www.help.senate.gov/issues/issue/?id=1f6217c5-a832-4e09-b851-56568b7b885e
 

oceiv

Senior Member
Messages
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Thanks, @Forbin :thumbsup:

From those committees the Chairmen and Ranking Members are:

Senate Health Committee:
Chairman
Lamar Alexander
(R-TN)

alexander.senate.gov

Ranking Member
Patty Murray
(D-WA)

murray.senate.gov

House Health Committee:
Joe Pitts (PA), Chairman
Gene Green (TX), Ranking Member

I've heard of all of them except Gene Green. But from his site, he seems to have sponsored and co-sponsored a lot of health bills. He must keep a very low media profile.


I also looked back into how the grassroots campaign (I referenced above) emailed congress members. It looks like the online tool was taken down. It was on a partisan site, anyway. So, we still have to solve how we can easily have patients, family, friends email congress members. Having people go to each congress members' site seems the only free way, right now. Does anyone in this thread or perhaps in the larger PR or ME/CFS community know about this aspect of contacting congress members? Can we get staffers' email addresses instead?

Here is a government search tool with direct links to our congress members (senate) online contact pages.

I did run across some paid online tools, but they would require another level to our advocacy and someone willing and able to manage them.
 
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oceiv

Senior Member
Messages
259
Thanks, @Sasha That intro and research goal are a great start. I just checked in Word, though and unfortunately as is, combined the intro and research text take up more than page. We do need to be able to fit other goals.:) Edits in length are necessary for our Lego strategy.

Aside from length, I have some suggestions/comments on the research goal. The comparable illnesses, MS and Lupus, have about a $100 million budget each (according to your NIH link). Not $250 million. Also $5 million times 50 isn't $100 million. Although medical research used to be a bipartisan goal, these days American congress members always like to appear budget conscious. I would strike "NIH budget cuts are irrelevant." I think COEs might fit in better with medical care or patient access.

For the intro, a description of what ME/CFS is would probably be needed for congress members who don't know about this disease.

Now, that we have one example of what a goal might begin to look like, perhaps others may want to dip their toe in the pool and take a stab at (mixing my metaphors) one of the other goals and/or alternate intros (to get around spam filters and busy staffers who weed out form letters)?
 
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WillowJ

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The comparable illnesses, MS and Lupus, have about a $100 million budget each (according to your NIH link).
yes, but was discussing per-patient budget. We are (2-3x?) more numerous than MS patients. Not sure about Lupus, but I think that is considered underfunded.

Not sure how 250 is calculated, though (I didn't finish the video yet, however). Whatever is done (100 mil for each regardless of reasons, 250 mil for reasons and calculations), the rationale should be clear.

I can't thnk clearly enough to write now. Will come back some other time.
 

oceiv

Senior Member
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@WillowJ Ah. If it's a calculation based on number of patients, then we should probably state that the factor went into the asked-for amount. If I was confused, probably our reps would be too. Thanks for commenting even if you weren't clear-headed! It sounded good to me.



Not sure how 250 is calculated, though (I didn't finish the video yet, however). Whatever is done (100 mil for each regardless of reasons, 250 mil for reasons and calculations), the rationale should be clear.

Yes.
 

oceiv

Senior Member
Messages
259
Consolidated goals list:

Remember, none of us needs to agree with all of the goals. If you see one you don't like, you don't have to use it. That very goal might be the very thing to get someone else to join the action. We're a heterogeneous group with diverse opinions. But we all agree that something should be done now and patients need to be heard on what that something is


For each one, we need an explanation of the current situation and suggestions on how to fix the problem:

  • We need increased, sustained, biomedical research funding from our government. I've consolidated all research goals into one. Need parity for similarly-disabling conditions and a specific funding amount backed up by an articulated rationale for the number. This research must have well-defined cohorts. Me/CFS experts picking the research subjects. The research must include a broad range of patients, including those who are housebound and bed-bound (severe).
  • 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
This goal replaced the patient care goal. The suggested fix was adding ME/CFS to the Americans with Disabilities Act, as has been done for many other diseases and disabilities. The ADA would ensure that ME/CFS patients could not be legally refused medical services.


  • A fundamental reboot in all facets of U.S. federal public health policy toward this disease.
Note, I think this goal relates to the health agency engagement goal, (which I took from an earlier @medfeb post) and could be combined with it. @Sasha used this concept in one intro option.



The following goals can fit with our Lego approach, but need suggested resolutions listed below:


  • 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).
We had discussed this goal, but didn't agree on which new home. Anyone fleshing out this goal would need to address where we fit best or better perhaps, suggest a (government) process to figure it out.


  • Better education for doctors so that patients can get care.
We had all wanted this outcome for patients, but didn't agree on which educational materials or treatments should be used. Anyone fleshing out this goal would need to address which educational materials would be used or how medical professionals would be educated. Also needed,which treatments aren't on the table (GET, CBT, etc.) - we disagreed about how best to talk about the treatments to our congress members.


  • Assign a medical specialty to the disease within 3 years.
Many of us want a specialty, but had different ideas on where we belong. This goal could go together with where we should be housed in government health agencies. Anyone fleshing out this goal could potentially suggest a (government) process to figure it out.



I support this goal (see beginning of this thread for reasons), but I'm separating it due to earlier discussion:

  • Testing/validation of the SEID criteria is necessary before they are applied and/or used in research
Generally, if this were any other disease, a validation study would be done before the criteria are used to define research cohorts. Since the report acknowledged that severe patients. patients with neurological and immune symptoms were under-studied, we do not then want to codify a cohort without these populations. This is not a judgment on the IOM report, one way or the other. We would simply be asking for the next logical and practical step. Leonard Jason supports further study.

Although this goal had initial agreement. there was later disagreement about it. The reason it came up was the worry that the new IOM criteria would soon become a research definition. One org may already be planning to use these criteria as a research definition. As for the issue of equality for ME/CFS, the definition of our disease has long-been decided without regard to if the definition includes too many or too few patients. Although, one study found that the new criteria would capture about 92% of patients, the remaining 8% of patients deserve equal progress. Patients in the most severe category, those with pain, neuroimmune and autonomic symptoms as well as those who lack unrefreshing sleep may not fit these new criteria. There has also been concern that some patients in the earliest stages might not fit these criteria. What this would mean is that some patients who previously had a diagnosis, might lose it, as well as lose a diagnosis code and other benefits. The fix would be a validation study with a broad-range of patients before putting the criteria into operation or research.

***Just another reminder that you don't have to support all goals. I'm posting this list so that people can pick which goal they might like to articulate for our letter.***
 

Sasha

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Thanks, @Sasha That intro and research goal are a great start. I just checked in Word, though and unfortunately as is, combined the intro and research text take up more than page. We do need to be able to fit other goals. Edits in length are necessary for our Lego strategy.

Yes, they do take more than a page - and I think that the intro and the funding goal are good examples of the kind of detail that we might need to put in in order to be persuasive. There's a real tension here between being persuasive and keeping things short enough to read. This is a problem with the 'many goals' approach.

I'm not saying that we shouldn't have several goals but having had a serious shot myself at making both the intro and the funding ask as short as possible while still being persuasive, I'd like to hand that challenge back to you and ask you to see if you can get them down to what you'd consider a suitable length while still being enough to persuade a congress rep who is unfamiliar with ME/CFS to act! I think I've included the main points so it's a question for you of editing down rather than writing from scratch.

I hope I'm not coming across as awkward - it's just that I can't see how to do what you're asking me to do.

Aside from length, I have some suggestions/comments on the research goal. The comparable illnesses, MS and Lupus, have about a $100 million budget each (according to your NIH link). Not $250 million. Also $5 million times 50 isn't $100 million.

Here's the relevant table. I've edited the text to show the calculation: $250 per patient (like lupus and MS) times 1 million patients.

Although medical research used to be a bipartisan goal, I would strike, these days American congress members always like to appear budget conscious. I would strike "NIH budget cuts are irrelevant."

NIH budget cuts have been a frequent counter-argument to our asking for a funding increase, even among patients. People don't get that you can halve the total funding pie but if we got our fair share of a reduced pie, it would be an astronomical increase for us. I really do think that point needs making but individuals can always edit it out if they want.

I think COEs might fit in better with medical care or patient access.

I agree, but someone needs to write that goal!

For the intro, a description of what ME/CFS is would probably be needed for congress members who don't know about this disease.

Yes, that would be good - but it will make it longer! I think you should have a go at the intro.

Now, that we have one example of what a goal might begin to look like, perhaps others may want to dip their toe in the pool and take a stab at (mixing my metaphors) one of the other goals and/or alternate intros (to get around spam filters and busy staffers who weed out form letters)?

I don't think we can write enough alternate intros to get around spam filters/gatekeepers. Staffers are going to be able to see at a glance at the body of the text that these are form letters, even if the intros are different. I think if we can just get people to personalise that first line, it will be as good as we can get. Just my view, though.

At this point, I think we need to focus on others writing some goals.

I read through the whole thread over the w/e before I wrote my stuff and in terms of what we're asking for, we're pretty fuzzy on some things.

@oceiv, your dealbreaker and the reason you wanted to do all this was the care goal, and there was a lot of discussion about that without anyone seeming to come up with a specific ask. And there were several issues - how to tackle your immediate problem of doctors refusing care; centres of excellence; and medical education.

Do you want to write the goal for your specific dealbreaker?
 

Sasha

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Consolidated goals list:

For each one, we need an explanation of the current situation and suggestions on how to fix the problem:

  • We need increased, sustained, biomedical research funding from our government. I've consolidated all research goals into one. Need parity for similarly-disabling conditions and a specific funding amount backed up by an articulated rationale for the number. This research must have well-defined cohorts. Me/CFS experts picking the research subjects. The research must include a broad range of patients, including those who are housebound and bed-bound (severe).
This is the one I tackled but I left out all the points at the end for brevity and because I think that that amount of detail and specificity is going to lose congress reps and distract from the main aim. We can't control all these details - if the research funding is increased, no-one at HHS is going to be reading our letters as though they're a list of instructions that they have to follow. We need big, simple asks (IMO), not least so that we look realistic about the process.
 

oceiv

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Messages
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@Sasha I need to reply to your post more tomorrow. Generally, we're going to present a Build-A-Letter approach. We're offering up a list of goals from which to choose. This is to get around the earlier discussion about which were top goals. We had several different lists of top goals from several people. This approach was also to get around my personal physical limitations of not being here that much. I do still need help in guiding this thread, time-wise. The Lego approach was also to get around me having to lead two threads. Congress members/their staffers won't take the time to read long letters. We had discussed varying the intros and asking people to write a unique beginning sentence(s). We much earlier already discussed the multiple goals issue and came to a compromise of a few goals. I would like not to go back to that discussion and instead move on from our disagreements and forward. You can PM me.

I've read through the goals discussions a bunch of times, including every time I've compiled goal lists. I started this thread for many reasons.

About the research goal, we need to add the inclusion of severe patients.

Goodnight.
 

Sasha

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@Sasha I need to reply to your post more tomorrow. Generally, we're going to present a Build-A-Letter approach. We're offering up a list of goals from which to choose. This is to get around the earlier discussion about which were top goals. We had several different lists of top goals from several people. This approach was also to get around my personal physical limitations of not being here that much. I do still need help in guiding this thread, time-wise. The Lego approach was also to get around me having to lead two threads. Congress members/their staffers won't take the time to read long letters. We had discussed varying the intros and asking people to write a unique beginning sentence(s). We much earlier already discussed the multiple goals issue and came to a compromise of a few goals. I would like not to go back to that discussion and instead move on from our disagreements and forward. You can PM me.

I've read through the goals discussions a bunch of times, including every time I've compiled goal lists. I started this thread for many reasons.

About the research goal, we need to add the inclusion of severe patients.

Goodnight.

I think we're in agreement - but in practice, I'm finding a tension between brevity (which I agree is desirable) and getting the point across sufficiently persuasively to people unfamiliar with ME/CFS and the issues. Having several goals (which I'm fine with) is adding to that tension because more goals means more words.

This is a practical problem, and I hope I don't seem to be arguing against what we've already agreed and that my comments seem supportive (which is their intention). I'm just saying that in writing terms, I've reached my limits in terms of making things short on the intro and funding goal and I therefore want to flag this up as an issue.

And I'm asking for help! I can't see how to make the intro and the research goal text shorter, especially with the suggested additions.
 

WillowJ

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And here's a draft (IOM version) of the request for more funding.

Biomedical research funding of $250 million per year
As the IOM report stated, although ME/CFS affects over one million patients in the US, with annual economic costs of $17 to $24 billion, there has been “remarkably little research funding”.

For years, ME/CFS has received a paltry average of $5 million annually. In 2014 it was, as usual, near the bottom of the NIH funding table at 231st out of 244 disease categories. Hay fever receives more money.

Because of this long history of catastrophically low funding, there has been very little research; the cause of ME/CFS remains unknown; there are no biological markers to diagnose the disease or measure progress in clinical trials; there are almost no clinical trials; there are no FDA-approved treatments; and top-level scientists who are ready to go with crucial research programs are unfunded.

I ask you to demand of HHS that ME/CFS gives biomedical research funding parity with similarly disabling diseases such as lupus and MS, which receive fifty times as much research funding per patient per year ($250 to our $5), despite affecting fewer patients put together than ME/CFS.

Parity would be $250 million a year ($250 per patient for a million patients) and would allow an aggressive program to understand all aspects of the disease. NIH budget cuts are irrelevant: we are asking for a fair share of the pie, regardless of the size of the pie.

HHS must make Requests for Applications (RFAs) in all areas of ME/CFS biomedical research, including for Centers of Excellence for treatment and research; biobanks; studies of incidence, prevalence and mortality; the disease’s natural course; biomarkers; biopathology; studies leading to drug treatments; and indeed all the basic research that should have been done decades ago.

I've left the disease title at ME/CFS as above, but of course anyone can use any title they like best. Whatever is chosen should be spelled out entirely, the first time it is used.

edit: Feel free to ignore these drafts. /edit
-----------------


Biomedical research funding of $250 million per year
As the IOM report stated, although ME/CFS affects over 1 million patients in the US, with annual economic costs of $17 to $24 billion, there has been “remarkably little research funding”.

ME/CFS has been historically underfunded, with an NIH budget of $5 million annually (compared to about $100 million each for multiple sclerosis and Lupus—on a per-patient basis, that's $250 for the others and $5 for ME/CFS). In 2014 ME/CFS was, as usual, near the bottom of the NIH funding table at 231st out of 244 disease categories. Yet FDA calls the condition "a serious disease" which "severely affects day-to-day functioning, and some patients struggle with the simplest tasks of daily life". Furthermore, FDA finds: "A significant unmet medical need exists for patients with CFS and ME."

Therefore we must insist that you act to correct this situation and consider time to be of the essence.

Parity would be $250 million a year ($250 per patient for a million patients) and would allow an aggressive program to understand all aspects of the disease. We are asking for a fair share of the pie, regardless of the size of the pie. People don't have different worths based on how well researched their disease has been in the past. We have unequal access to diagnosis and care because doctors don't know what to do, and our researchers cannot access research funding even when they have a good idea what they should study (even Prof. Ian Lipkin from Columbia University, so we know it is not that they cannot write a good grant proposal). NIH tells us they cannot fix this on their own, so it's clearly up to Congress.

NIH should appoint someone to write a plan for how to increase research, possibly someone from the National Instutie of Neurological Disorders and Stroke (NINDS), National Institute of General Medical Services (NIGMS), National Institute of Allergy and Infectious Disease (NIAID), or National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). This plan would include such things as Requests for Applications (RFAs) in all areas of ME/CFS biomedical research, including for Centers of Excellence for treatment and research; biobanks; studies of incidence, prevalence and mortality; the disease’s natural course; biomarkers; biopathology; studies leading to drug treatments; and indeed all the basic research that should have been done decades ago.

-----------

ok, so not shorter. This is hard.

------------------

Biomedical research funding of $250 million per year
As the IOM report stated, although ME/CFS affects over 1 million patients in the US, with annual economic costs of $17 to $24 billion, there has been “remarkably little research funding”.

ME/CFS has been historically underfunded, with an NIH budget of $5 million annually (compared to about $100 million each for multiple sclerosis and Lupus—on a per-patient basis, that's $250 for the others and $5 for ME/CFS). In 2014 ME/CFS was, as usual, near the bottom of the NIH funding table at 231st out of 244 disease categories. Yet FDA calls the condition "a serious disease" which "severely affects day-to-day functioning, and some patients struggle with the simplest tasks of daily life". Furthermore, FDA finds: "A significant unmet medical need exists for patients with CFS and ME."

Therefore we urge you act to correct this situation and consider time to be of the essence.

Parity would be $250 million a year ($250 per patient for a million patients) and would allow an aggressive program to understand all aspects of the disease. We have unequal access to diagnosis and care because doctors don't know what to do, and our researchers cannot access research funding even when they have a good idea what they should study (even Prof. Ian Lipkin from Columbia University, so we know it is not that they cannot write a good grant proposal). NIH tells us they cannot fix this on their own, so it's clearly up to Congress.

NIH should appoint someone to write a plan for how to increase research, possibly someone from the National Instutie of Neurological Disorders and Stroke (NINDS), National Institute of General Medical Services (NIGMS), National Institute of Allergy and Infectious Disease (NIAID), or National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). It is essential that the plan includes innovative ways to study homebound, bedridden, and the very severe patients.
 
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WillowJ

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ps, apparently my email campaign info is terribly outdated. They have software programs that will sort mail into an "email campaign" bucket. As far as I know, they should still read one and count them all.
 

Sasha

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@WillowJ - some good stuff in there but mine was 290 words, your first version is 400 words and your second version is 320.

My draft intro is 180 words.

A page and a half of A4 is approx. 750 words.

A sentence is roughly 25 words, so 750 words gives us 30 sentences.

Not all goals will need to be written to the same length as the funding goal (which needs some detailed numerical comparison to other diseases and some detailed spelling out of what needs doing).

@oceiv, am I right in thinking that you'll be asking people to send in an intro plus their top three goals or something like that?

How do you see this breaking down in terms of word length?

I don't mean to pressure you - I think you're having to come to this in short bursts while you're dealing with other stuff - take your time!
 

WillowJ

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some good stuff in there but mine was 290 words, your first version is 400 words and your second version is 320.
yes, not short especially after I spelled out 4 agencies. Probably too many!

Most Congresspeople would want more lay/legal language than medical (I think), so I wrote to that, but yes, too long.

I think we can explain the need and urgency once only, then leave it out of the other parts. More editing for later.