Llewlyn King's ME/CFS manifesto

[Simon]

Full article on page 19 of the ME Global Chronicle (download)

I consider this a manifesto for the ME/CFS community. These are my thoughts, after nearly five years of watching the anguish and the neglect that surrounds this disease. The manifesto states what I think should be done now. And “now” is an important word....

I want my friends and loves, who are in the grip of a relentless affliction, whose days are torn from the calendar of hell, to be cured in my lifetime -- and I am 74....

I have spent nearly 50 years writing about federal funding for energy, science and technology, and the sums of money spent has been in the tens of billions of dollars. One company gets more than $60 million year-in and year-out for nuclear fusion research -- and I see nothing wrong with that. 15 But when I look at the federal funding for ME/CFS research, I am aghast: It is not funded at a level that can be expected to produce results. It is, to my mind, a crime against the sick; morally, if not criminally, indictable. To allow the scale of suffering that attends ME/CFS, without making research on the disease a national priority, is close to willful neglect; an abrogation of the high purposes of Hippocrates' calling...

It is appalling that Dr. Ian Lipkin, the highly respected virus hunter, is trying to raise $1.27 million through crowdfunding to investigate the role of microbiome in ME/CFS. What we are seeing is a scientist forced to beg. Yet this fundamental research, with application for diseases beyond ME/CFS, is at the frontier of biomedical science...

There are three principal reasons why these voices are not heard by those who need to hear them: ME/CFS is a hard story for the media to grasp. ME/CFS has no celebrity doing what Elizabeth Taylor did for AIDS, what Jerry Lewis did for Multiple Sclerosis, or what Michael J. Fox is doing for Parkinson's Disease. ME/CFS has no presence in Washington. Of the three, the last is the most critical to act on, and it is the one that would produce the most measurable result. Simply stated: Being on the ground in Washington every day is the essential step the community has to take. To get results in Washington, you need to-see-and-be-seen in the daily life there. Letters and petitions do not have nearly the impact as a Washington denizen talking to a decision-maker in person.

... How much ME/CFS will need and for how long is an existential question. Money stimulates research, attracts new young minds to the field and leads to success. Right now, there is so little money funding so few researchers in ME/CFS. In the United States, that success may be a long time in coming – too long for those for whom today will be a living hell, as yesterday was and tomorrow will be. I figure that for as little as $1 million, a start toward a Washington presence can be made. That would cover one advocate/lobbyist, one office and one assistant for one year; not a smidgeon of attention from a giant lobbying firm, but a dedicated ME/CFS standard-bearer. Funding should grow within a year, as the ME/CFS cause comes out of the shadows. ..

If this is not done the government will continue to ignore the case for ME/CFS.
Worse, the new billionaires who are beginning to throw real money into
biomedical research will not know about ME/CFS. It will be hidden in plain sight
much as it has been from the wider public.

 

[Sasha]

Very interesting - I doubt few of us know much about how to do this kind of lobbying (I certainly don't). Sounds like an excellent investment and I believe Llewellyn King knows what he's talking about. How Washington works is his area of expertise.

 

[Snow Leopard]

Llewellyn King is of course right, but the question is how can we change things? There have been those who have tried to take things to Washington with little success, what will it take to break through?

 

[Sasha]

Llewellyn King is of course right, but the question is how can we change things? There have been those who have tried to take things to Washington with little success, what will it take to break through?

I think the idea is to pay for a lobbyist. Have we done that before? I don't recall anything. We have sporadic attempts by patient-advocates to get Washington's attention but because we're all so sick, they're brief and occasional (unless there's stuff going on behind the scenes that I don't know about). We don't have anyone there all the time able to have face-to-face meetings with opinion leaders and senators/congresspeople.

I don't know how one would go about this. Does anyone know Llewellyn King? I wonder if he'd be willing to come here to discuss how to set about this, or perhaps to talk with our advocates to get some kind of fundraising project together. @jspotila - I keep tagging you about this sort of thing, I'm afraid! Do you have any views on this? It would seem a good investment. Somehow, we've got to get pressure on the NIH to start spending serious money. MS gets roughly 60 times the amount of money per patient as we do, and MS has a very similar disability profile to ME.

 

[CBS]

Original post deleted by author due to lack of constructive content and an excess of frustration directed against an individual or group of individuals.

 

[justy]

Original post deleted by author due to lack of constructive content and an excess of frustration directed against an individual or group of individuals.

sorry I don't understand your post?

I think this is a great idea.

 

[jspotila]

I think the idea is to pay for a lobbyist. Have we done that before? I don't recall anything. We have sporadic attempts by patient-advocates to get Washington's attention but because we're all so sick, they're brief and occasional (unless there's stuff going on behind the scenes that I don't know about). We don't have anyone there all the time able to have face-to-face meetings with opinion leaders and senators/congresspeople.

I don't know how one would go about this. Does anyone know Llewellyn King? I wonder if he'd be willing to come here to discuss how to set about this, or perhaps to talk with our advocates to get some kind of fundraising project together. @jspotila - I keep tagging you about this sort of thing, I'm afraid! Do you have any views on this? It would seem a good investment. Somehow, we've got to get pressure on the NIH to start spending serious money. MS gets roughly 60 times the amount of money per patient as we do, and MS has a very similar disability profile to ME.

The CFIDS Association paid for professional help in DC for many years. Some advocates have expressed frustration in the past about what they felt was a poor showing for the money.

The thing to realize is how incredibly costly it is to get professional help, even on a small scale. People may be frustrated with the Association's results, but the budget was generally less than $150K a year. That is NOTHING in lobbying terms, although it is a great deal of money to us. I am aware of at least one other effort to pay for this kind of expertise, this one funded out of an advocate's personal pocket. That totaled less than $10K. Individual advocates are making trips to DC and walking the halls, getting meetings and doing what they can.

Do we need professional lobbying? Yes. Can we afford the scale of help needed to force real change? Not given the track record of other fundraising initiatives for research and other efforts over the years. This is even more true now that limits on campaign contributions are being rolled back. We need at least $1 million and a LOT of free legwork to even start to make headway. If someone can fund that, I'm all for it.

 

[taniaaust1]

My thoughts about putting ME/CFS on the map of people really getting to know what this illness is about, is to get some good movie producer interested in it so hopefully do a really good drama on it. There are dramas out there on all other kinds of illnesses Ive watched at times and helped me understand different illnesses and ME would make a very good drama due to all the different situations a ME person faces in life. I think a very interesting movie could be made out of it.

How will we ever get the general population to help fund for our illness if they cant understand it at all and have nothing to relate it too.

 

[Daffodil]

its a shame that celebrities who supposedly have CFS, such as Cher or Flea, are not speaking out and trying to create awareness.

 

[caledonia]

You have to spend money on lobbying to get money for research from the government. The money you spend on lobbying (and campaign contributions), the more money you get in research.

I've been researching this using http://influenceexplorer.com/. Do a search for the CFIDS Association. It says this strange thing - they hired the Sheridan Group for $1.2 million, but only $190,000 is showing up as being spent over "all years". I'm not sure how far that goes back, or when they started with the Sheridan Group.

Compare that to two ALS orgs combined spent $720k over ten years and got $47 mil in 2010. The MS Society spent $200k to $1.2 milllion consistently every year over 10 years. MS funding for research is $133 million in 2010.

Assuming the CAA actually did spend the 1.2 million, they got a very poor showing for their money compared to ALS.

The mistake could be using the Sheridan Group, which as far as I can tell is a very large lobbying firm. One of their clients is the American Cancer Society (huge bucks!). Poor little CFIDS likely got lost in the shuffle. I found other research that suggests that using a very small lobbying firm is a better choice. (They're cheaper too.)

In Llewellyn's ME/CFS Alert on the same subject,

he also says that a "presence" in Washington can help get in you in all the important national media such as the Wall Street Journal, New York Times and Washington Post.

 

[jspotila]

You have to spend money on lobbying to get money for research from the government. The money you spend on lobbying (and campaign contributions), the more money you get in research.

I've been researching this using http://influenceexplorer.com/. Do a search for the CFIDS Association. It says this strange thing - they hired the Sheridan Group for $1.2 million, but only $190,000 is showing up as being spent over "all years". I'm not sure how far that goes back, or when they started with the Sheridan Group.

Compare that to two ALS orgs combined spent $720k over ten years and got $47 mil in 2010. The MS Society spent $200k to $1.2 milllion consistently every year over 10 years. MS funding for research is $133 million in 2010.

Assuming the CAA actually did spend the 1.2 million, they got a very poor showing for their money compared to ALS.

The mistake could be using the Sheridan Group, which as far as I can tell is a very large lobbying firm. One of their clients is the American Cancer Society (huge bucks!). Poor little CFIDS likely got lost in the shuffle. I found other research that suggests that using a very small lobbying firm is a better choice. (They're cheaper too.)

The Association actually "inherited" the Sheridan Group in the early 1990's when another CFS group could no longer foot the bill. Tom Sheridan may have been a solo practitioner back then, or had a very small staff. His business grew dramatically over the years. My recollection is that the Association stayed with the Sheridan Group for more than 15 years, and that $1.2 million figure sounds about right spread over that entire time.

The numbers from those other disease groups are interesting, but sound low to me. It would be interesting to compare the volunteer numbers, since I think ALS and MS both have larger and more organized grass roots communities than we do. In fact, the MS Society started lobbying back in the 1950s when a Senator had a daughter (I think) with MS. The NIH institute for neurological diseases actually came into being due to the efforts of the MS Society decades ago. So their influence is really far greater than $1.2 million/year for 10 years.

 

[caledonia]

My thoughts about putting ME/CFS on the map of people really getting to know what this illness is about, is to get some good movie producer interested in it so hopefully do a really good drama on it. There are dramas out there on all other kinds of illnesses Ive watched at times and helped me understand different illnesses and ME would make a very good drama due to all the different situations a ME person faces in life. I think a very interesting movie could be made out of it.

How will we ever get the general population to help fund for our illness if they cant understand it at all and have nothing to relate it too.

Actually, there are two documentaries in the works, coming out I think in 2015? The Blue Ribbon by Ryan Prior and Canary in a Coalmine by Jen Brea. They were crowded funded by patients.

 

[Seven7]

So where do we go from here, I want to help wih the lobying idea, I think is great. Let me know in any leg worked I can help with.

 

[taniaaust1]

Actually, there are two documentaries in the works, coming out I think in 2015? The Blue Ribbon by Ryan Prior and Canary in a Coalmine by Jen Brea. They were crowded funded by patients.

Thanks I only knew about one of those.

I wasnt really refering to a documentary but more so a made up drama (but with situations which really do happen) or it could even be a comedy on it!! We all do dumb things with this illness eg I showered with my handbag once, it filled up with water and then me and my sister spent ages trying to separate and dry out all my notes, money etc which were in it. Many people dont tend to watch documentaries much and they never seem to become big hits or classics but yeah, those are very important too and I think will help.

 

[caledonia]

Thanks I only knew about one of those.

I wasnt really refering to a documentary but more so a made up drama (but with situations which really do happen) or it could even be a comedy on it!! We all do dumb things with this illness eg I showered with my handbag once, it filled up with water and then me and my sister spent ages trying to separate and dry out all my notes, money etc which were in it. Many people dont tend to watch documentaries much and they never seem to become big hits or classics but yeah, those are very important too and I think will help.

I've always thought that Osler's Web would make a great movie.

 

[justy]

Just noticed this from Ian Lipkin, in his interview with Mindy Kitei - her argues that we need lobbying in Congress

Kitei: But it’s a vicious cycle. If you can’t get funding—
Lipkin: It’s not the leadership of NIH. That’s not the problem. The problem is that you need a champion in Congress who's going to go ahead and say, I want money allocated for chronic fatigue syndrome research. That’s the way it gets done. That’s the way HIV got done, that’s the way breast cancer got done, and so on. It has to be somebody who has some ability to influence the purse. And if that happens, the NIH would only be too happy to take the money and to allocate it and get the best science done. That’s all the NIH cares about.

Just jumped out at me in relation to this discussion...

All the best - Justy.

 

[justy]

Congress doesn’t listen to scientists. They listen to people who vote for them. I was very involved in getting the autism bill passed, in the late 1990s and early 2000s. And it was two parents and a few of their friends who went down and lobbied on Capitol Hill and pushed through this first bill that created the autism Centers of Excellence. And it was the parents who did it. The problem is with chronic fatigue syndrome, and I feel bad about this, these are the most vulnerable people. They don’t have the energy or the resources that are needed to go and lobby

.

http://www.cfscentral.com/2014/05/candid-conversation-with-dr-ian-lipkin.html#comment-form

 

[taniaaust1]

I've always thought that Osler's Web would make a great movie.

Yeah agree it would. Maybe the ME/CFS community should be making sure all the top movie producers are given a copy of that book. If only we could get one of them interested enough

 

[manna]

Thanks I only knew about one of those.

I wasnt really refering to a documentary but more so a made up drama (but with situations which really do happen) or it could even be a comedy on it!!

there are a couple around the topic of me/cfs that spring to mind..."Safe" starring Julianne Moore....who does a very accurate portrayal of what its like to live with Multiple Chemical Sensitivity...a good film too, worth a watch even if you don't have mcs but its not very well known. http://www.imdb.com/title/tt0114323/?ref_=fn_al_tt_2

and "Lymelife" with Alec Baldwin...kind of dark comedy and really "Lyme", though it features alot, is more what the story is bulit around than about.http://www.imdb.com/title/tt0363780/?ref_=nv_sr_1 both films have an imdb of 7.1. I assume most folk have heard of that one, or both...would like to hear of more if anyone knows of any.

i think it would be good to do a drama/comedy just with me/cfs...any topic can be fun, moving etc if written well. oslers web sounds interesting

 

[taniaaust1]

there are a couple around the topic of me/cfs that spring to mind..."Safe" starring Julianne Moore....who does a very accurate portrayal of what its like to live with Multiple Chemical Sensitivity...a good film too, worth a watch even if you don't have mcs but its not very well known. http://www.imdb.com/title/tt0114323/?ref_=fn_al_tt_2

and "Lymelife" with Alec Baldwin...kind of dark comedy and really "Lyme", though it features alot, is more what the story is bulit around than about.http://www.imdb.com/title/tt0363780/?ref_=nv_sr_1 both films have an imdb of 7.1. I assume most folk have heard of that one, or both...would like to hear of more if anyone knows of any.

i think it would be good to do a drama/comedy just with me/cfs...any topic can be fun, moving etc if written well. oslers web sounds interesting

Wow thanks. Im a bit of a movie buff but hadnt heard of either of those before (maybe it's cause Im in Australia?? but still). I'll see if my library can get hold of them or even buy them in.