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

[Sasha]

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

I agree - that needs to be in the intro and not repeated in the goals.

 

[oceiv]

I will look over the intro and goals to see what our options are in length.

 

[oceiv]

I have edited a shorter draft from @Sasha 's intro and research goal (less than one page). However, it's still long and I'm worried that it will allow only for one goal, maybe two (if the letter is 1 1/2pages). There could be even shorter versions, but it's a give and take scenario. Perhaps a page and a half is OK???

I would also like to have a similar edit pass at @WillowJ 's less scientific-language research goal. Plain language is a good idea.

But I need your suggestions and ideas as to how to include at least one more goal. Sigh.

I saw that @JenB 's new venture can potentially include:

• One Click Politics (for contacting members of congress – US, Canada and Australia with UK + New Zealand coming soon) – this is something that is pricey but we can add it immediately if there is an emerging action that could use this tool.

When we get a few more goals written, this could be a good way to automate our letters to congress. If we have a more emergent action, someone could then contact @JenB .

 

[WillowJ]

not sure how much I can do for a bit yet.

 

[oceiv]

I understand @WillowJ You did contribute the alternate research goal and it was a good contribution. Also, yours and others' comments help move us along in the right direction.

A group of us working on short-term tasks, could potentially get us closer. Each person could then get needed rest in between tasks.

I've been also needing extra rest (or should I say extra, extra rest?). An unfortunate reality for our disease.

 

[WillowJ]

I've been also needing extra rest (or should I say extra, extra rest?).

extra, extra works. take care

 

[oceiv]

I'm going to start on @WillowJ 's research goal (might take a while). I may have some ideas for a non-IOM version intro, but probably won't start on that idea right away.

Two questions: What are some of your favorite ME/CFS quotes from experts? Particularly, on what the needs are, describing the disease in a good way and on what can be done to fix things?

Does anyone know of studies, articles or blogs on patient access or care? I did some searches and the pickings were slim.

 

[Sasha]

I'm going to start on @WillowJ 's research goal (might take a while).

I think it might be better to just have one version of each goal. I think we're already asking quite a lot of people if they're going to put a letter together from Lego blocks, considering how cognitively challenged PWME are. If there are alternate versions of the intro plus alternate versions of some of the goals (but presumably not others) and they've got to come up with their own email title to avoid spam-catchers and add a bit of personalisation, and choose which goals are most important to them... I think that's way too much for a lot of people (possibly most people) to handle.

It's also going to take a lot of explaining, and with all the various goals it's going to take a long, long document, even without alternative versions.

I'd suggest taking the points you want from my and @WillowJ's funding goal versions and combining them into a single version and getting it down to the length you want.

Just my view, though.

 

[oceiv]

I'm confused by this reply @Sasha I'm talking about the editing process. I'd like to see the two research versions "side-by-side" or in our case, in one post. How I envisioned the process was that I'd have an edit pass at both research versions and then post them here for discussion. Also, as for me combining the research goals, the point of splitting up goals was to spread out the effort by any one person. But in any case, written goals would get discussion here before approving final wording in the letter.

Given that confusion, I'm working on the patient access goal, in the meantime. I still need studies, articles, blogs or quotes on patient access or care, if someone could point to any or to someone whom I might ask.

 

[Sasha]

I'm confused by this reply @Sasha I'm talking about the editing process. I'd like to see the two research versions "side-by-side" or in our case, in one post. How I envisioned the process was that I'd have an edit pass at both research versions and then post them here for discussion. Also, as for me combining the research goals, the point of splitting up goals was to spread out the effort by any one person. But in any case, written goals would get discussion here before approving final wording in the letter.

I wrote a draft of the research goal based on the discussion we'd had on the thread and then asked for help with what to cut because you felt it was too long and I didn't know what you would find it acceptable to cut - and you wanted extra items in it (a reference to severely affected patients, and a description of the disease).

@WillowJ had a go but ended up writing something both longer (happens to us all ) and different. Her version contains some of the same info and arguments as my piece but also some new stuff and recommendations that we haven't discussed on the thread (appointing someone from one of the NIH institutes to formulate a funding plan). That's fair enough but indicates that we haven't necessarily got to the point of agreeing what the ask is.

Given that you like both well enough to try to edit both, I'm assuming that you like the content in both but the two versions call for different things.

I think it's now a matter of first choosing which content you want in the text. That's a content issue rather than an editing issue: and once you've made that decision, you can then try to edit the text to get it to the length that you want.

I'm assuming that you want to end up with a single piece of text for the funding goal? Rather than alternative versions for end-users to choose between when building their Lego letter?

Given that confusion, I'm working on the patient access goal, in the meantime. I still need studies, articles, blogs or quotes on patient access or care, if someone could point to any or to someone whom I might ask.

I think it would be good to see if CFSAC has made any relevant recommendations (which will have been ignored, of couse).

 

[WillowJ]

Her version contains some of the same info and arguments as my piece but also some new stuff and recommendations that we haven't discussed on the thread (appointing someone from one of the NIH institutes to formulate a funding plan). That's fair enough but indicates that we haven't necessarily got to the point of agreeing what the ask is.

Good point. My error, sorry.

@Sasha worked hard to use wording from earlier posts.

I worked off of Sasha's but was trying to revise (for length, hahaha) and didn't stay on point.

 

[WillowJ]

I'm working on the patient access goal, in the meantime. I still need studies, articles, blogs or quotes on patient access or care, if someone could point to any or to someone whom I might ask.

For quotes, it's probably possible to email any of the clinical and/or research docs, like Jose Montoya, Nancy Klimas, Mary Ann Fletcher, Leonard Jason, John Chia, Andy Kogelnik, etc.

Many are on video here:
https://www.youtube.com/user/MECFSAlert

Probably the FDA report and the IOM report would be the richest US studies I can think of on patient access (or lack thereof) and the IOM report may have references; Lenny Jason has published some stuff on lack of medical training, and there are some UK studies on unmet needs (CDC has been more interested in publishing how "well" its outreach programs are working, than in checking in with patients about what the unmet needs actually are). I might be able to post some UK studies here later.

 

[oceiv]

I'm understanding more now. Aside from the content issues like the research plan and other points, I see that the main difference is scientific versus plain-language. I think the language approach is really our call as a group: what we think is best, most-appealing and most-convincing. But, I understand the point about working from previous discussion.

Here are the mostly-edited versions in one post. I didn't get to a full edit of @WillowJ 's version because of the points above. I went over @Sasha 's version carefully, playing with spacing and any possible wording ways of shortening, being mindful of how congressional staffs have limited time. I didn't put in that level of detail with @WillowJ 's. With my editing, they cover similar points in different ways. Perhaps, we could discuss the language difference aspect? As the content issue was just discussed. I do think I've read a lot of advocates writing about the RFA issue, though. The links didn't transfer in the copy from Word. Excuse any errors, since the editing was truncated. I shared some good ideas from each in the other version.

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

For years, ME/CFS has gotten a meager $5 million average in annual funding. In 2014, ME/CFS was near the bottom of the NIH funding list, 231st out of 244 diseases. Similarly-disabling diseases, Lupus and M.S. receive 50 times more research funding per patient per year, despite fewer patients combined. ME/CFS patients are asking for a fair share of the budget pie, regardless of the size of the pie

This long history of catastrophically-low funding has resulted in scant ME/CFS research and clinical trials, the cause of ME/CFS remaining unknown, no biological diagnosis tests, no progress markers for clinical trials, no FDA-approved treatments and top scientists with crucial research programs remaining unfunded. Funding inequality means that home-bound/bed-bound (severe) patients rarely get studied.

Funding parity would finally allow an aggressive, biomedical research program into all of the above and into drug and medical treatments, biobanks, studies of severity, incidence, prevalence, progression and mortality, biopathology and sub-types. But none will happen without your insistence and action.

Similar diseases already get such research. ME/CFS patients have waited for decades. Without this research, ME/CFS patients will remain unequal for decades more. Please demand that ME/CFS gets biomedical research funding parity: $250 million/year.

Sustained 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 per year. Multiple Sclerosis and Lupus receive about $100 million each. In 2014, ME/CFS was near the bottom of the NIH funding list, 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."

Parity with similarly-disabling diseases would be $250 million a year and would allow an aggressive program to understand all aspects of the disease. We are asking for a fair share of the budget pie, regardless of the size of the pie. People don't have different worth depending on how well-researched their disease is. Unequal research funding influences unequal patient care. ME/CFS researchers cannot access funding even when they have ready, promising plans. Renowned virus-hunter, Ian Lipkin, who has worked on AIDS and SARS, recently couldn’t get funding for his ME/CFS research. NIH tells the patient community and researchers that they cannot fix this problem on their own. A fix for desperate patients is up to congress.

With a push from congress, NIH could write and implement a plan for how to increase ME/CFS research. This plan would include 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 for potential drug treatments; and indeed all the basic research that should have been done decades ago.

Therefore we must insist that you act to correct this situation and consider time to be of the essence. Please demand that ME/CFS gets biomedical research funding parity: $250 million/year.

 

[oceiv]

@Sasha Thanks for the good CFSAC suggestion. I wouldn't have thought of it.

For quotes, it's probably possible to email any of the clinical and/or research docs, like Jose Montoya, Nancy Klimas, Mary Ann Fletcher, Leonard Jason, John Chia, Andy Kogelnik, etc.

Many are on video here:
https://www.youtube.com/user/MECFSAlert

Probably the FDA report and the IOM report would be the richest US studies I can think of on patient access (or lack thereof) and the IOM report may have references; Lenny Jason has published some stuff on lack of medical training, and there are some UK studies on unmet needs (CDC has been more interested in publishing how "well" its outreach programs are working, than in checking in with patients about what the unmet needs actually are). I might be able to post some UK studies here later.

I looked in the IOM report and there were two studies. Strangest thing though. The ProHealth survey's two relevant questions add up to over 100%. I don't know if I'm missing something. SCMI's survey had graphs, but not exact numbers. I found one article with exact numbers for one of their questions.

3. How long did it take you to be diagnosed with ME/CFS by a healthcare provider?
29% had been ill from 6 to 20-plus years before being diagnosed.

Under 1 year....275....23%
1-5 years.........579....78%
6-10 years.......171....14%
11-15 years.......80......7%
16-20 years.......53......4%
20+ years..........52......4%
________________________
Total..............1210....100%

My note: This adds up to 130%

Edit: I guess I could try to calculate based on the patient numbers.

4. How many healthcare providers did you see before you were diagnosed?
44% saw from 5 to more than 20 doctors before being diagnosed


1-4 doctors........679....58%
5-9 doctors........336....28%
10-15 doctors.....110.....9%
16-20 doctors.......34.....3%
More than 20........53.....4%
_________________________
Total.................1212....100%

My note: This adds up to 102%

This is the SCMI report. No accompanying text for graphs. I can (sort of) get approximate numbers.

These oddities kind of highlight the need for more research, themselves, unless I'm missing something.

I read through this Leonard Jason article. Is this the one you meant, @WillowJ ? Do you mean the FDA study linked to in your research goal text? MECFSAlerts is also a great idea. Thanks!

I came across one UK org survey earlier (didn't bookmark, unfortunately) and was wondering if congress members/staff would want only U.S. info?

The absolutely absent info is really on how many patients are getting treatment at all. Do they only get treatment for co-morbid conditions, from local doctors? How many patients aren't managing to get to a doctor who will treat them effectively? Most states have no ME/CFS docs. That part is certain.

 

[taniaaust1]

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 agree with Sasha, that is a point which really does need to be made or you wont find they listen and there will be budget cut excuse over why more money isn't going into ME/CFS. This is predictable.. hence Sashas point needs to be made with it clear of the whys (as in the letter example she did).

I'm going through that with my state government here in Australia currently, I don't get ANY funding of various government disability services support for being disabled with ME/CFS..No one here with this does (no home services for it etc) and I kept running into gov funding and cutback excuses with the states disability service on why I haven't been given the help I should of been.

So I've ended up taking the government to court for discrimination over ME/CFS over this... gov funding cut backs are NO EXCUSE at all not to be treating us like any other disability/illness. We should be treated equally to other illnesses of the same degree of illness with the numbers of affected put into account too.

If things aren't put clear enough, they will be swept under the carpet one could say.

 

[oceiv]

@taniaaust1 To make clear the quoted part,. it wasn't the point itself, but rather the "irrelevant" phrasing that was the objection. We've started Presidential primary season here. Many of the speeches are already pushing budget cuts, massive ones. We can play around with the wording, but budget cuts are most certainly always relevant in U.S. politics. To say that they're irrelevant would be a slap in the face to many congress members. Not the best approach when asking congress members to help us. So, the budget point needs to be made in a different way. I take your point on clarity being necessary and being direct. We will have to do so with other wording, though. We do also need to be mindful of the letter's length.

It's unbelievable what you've had to endure. The awful effects on your health, must make it harder. I can't even imagine being able to wage such battles being this severe. I think of the limits of what I can do with my own severity. Hopefully, your sacrifices will pave the way for other struggling patients. We don't have such government home care benefits here in the U.S.. Medicare doesn't pay for unskilled care. Only skilled care and only those with limitations. Long-term care is not covered. Medicaid has some nursing home benefits. Good luck on the legal outcome.

On another goal we discussed: here's an HR article on where our new NIH home could be, The two suggestions there were brought up in this thread, earlier. The OWRH has seemed to try, but they have little funding, themselves.

Now, we just need writers for the other goals.

 

[oceiv]

Here's what I found as far as recent (ish) CFSAC recommendations:

some of the recommendations:

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) unanimously stipulated that all references to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in these recommendations are defined by the 2003 Canadian Consensus Criteria (CCC)1.

1. CFSAC recommends that the Secretary fund ME/CFS commensurate with the epidemiologic prevalence and economic burden that this disease imposes on American society. 2,3

2. CFSAC recommends that HHS provide opportunities for dissemination of information through the development of a curriculum at all U.S.-based medical schools providing the tools needed for physicians and other medical professionals to recognize ME/CFS as defined solely by the 2003 CCC and to make appropriate referrals.

3. CFSAC recommends that funding be allotted to the appropriate agencies that can best develop teaching modules featuring ME/CFS patients with complex presentations as defined by the 2003 CCC.

4. CFSAC recommends that HHS provide funding through Health Resources and Services Administration (HRSA) and other agencies to support integrative medicine programs featuring learning about ME/CFS patients as defined by the 2003 CCC.

5. CFSAC recommends that HHS fund through appropriate agencies novel programs such as “Project Echo”4 comprised of experts and/or multidisciplinary teams with expertise in ME/CFS that reach areas where patients do not have access to adequate clinical care for ME/CFS as defined by the 2003 CCC.

4. Khatrik K, Haddad M, et al. Project Echo: replicating a novel model to enhance access to hepatitis C care in a community health center. J HealthCare Poor Underserved. 2013 May; 24(2):850-8.

I may have found the Lenny Jason research @WillowJ mentioned. It's for neuro-endocrine-immune disorders (CFS. FMS and Lyme). Not CFS alone: PDF link. Is this the one? Hopefully, it's OK to cite research that isn't specifically for CFS. The three older studies cited in Jason's paper are unavailable for free access and psychologically-oriented.

 

[Sasha]

@taniaaust1 To make clear the quoted part,. it wasn't the point itself, but rather the "irrelevant" phrasing that was the objection.

I take your point - in your current edit, though, we're left with:

ME/CFS patients are asking for a fair share of the budget pie, regardless of the size of the pie​

which doesn't have any context about why the size of the pie is an issue so it would be easy to skip over that part and not realise that it relates to budget cuts (on my first reading, I didn't notice that it was there). I think it needs a statement that budget cuts are irrelevant to our argument about our share of the pie, so something like:

Although NIH may well have large budget cuts, ME/CFS patients are asking for a fair share of the budget pie, regardless of the size of the pie.​

 

[oceiv]

Good wording suggestion, @Sasha . I, like you, cut for length. If we're going to add in length to the letter, then I'm going to try to add back our original discussion points: well-define cohort/broad-range of patients (demographics, severity). These points were brought up early in the thread and had agreement. When I was trawling for research on patients and doctors, the studies I read reinforced the point repeatedly. If we don't have well-defined, accurate cohorts and we have inconsistent definitions, then the resulting research is going to be inconsistent and messy.

Just have a look on page 16 and 17 of this meta-review of previous CFS/ME studies, it's a mish-mash of case definitions. The full text is available for free, by clicking on the right of the page.

Edit: I thought of the sequestration cuts, as we don't know if they'll be gone or not in the next budget. The vary in size, slightly, each year. I didn't know if some congress members might not consider those large cuts (approximately 10%) I went with this version.

For years, ME/CFS has gotten a meager $5 million average in annual funding. In 2014, ME/CFS was near the bottom of the NIH funding list, 231st out of 244 diseases. Similarly-disabling diseases, Lupus and M.S. receive 50 times more research funding per patient per year, despite fewer patients combined. Although NIH may well have varying future budget cuts, ME/CFS patients are asking for a fair share of the budget pie, regardless of the size of the pie.

Sound good?

 

[taniaaust1]

We don't have such government home care benefits here in the U.S.. Medicare doesn't pay for unskilled care. Only skilled care and only those with limitations. Long-term care is not covered. Medicaid has some nursing home benefits. Good luck on the legal outcome.

Thanks. My government doesn't pay for unskilled care either nor our medicare like your own country as far as that goes. Only those here who have severe disabilities (which SHOULD include our severely disabled) get government paid for professionals from disability support agencies eg professional carers.

Thanks for putting in the work you are here ociev to try to get people working to help things move in better directions.