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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Ian Lipkin: make a big noise for more CFS funding

Discussion in 'Action Alerts and Advocacy' started by Simon, Sep 24, 2012.

  1. Simon

    Simon

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    At the XMRV results Press Conference last Tuesday, Ian Lipkin made a strong appeal for people to put pressure on politicians in order to secure more funding for CFS.
    This clip comes from part 3 of the press conference video, at 4'30"



    I'm pretty sure there's more on this, either later in this clip of in the final clip, part 4
  2. Tally

    Tally Senior Member

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    He is right. I think even though it might be impossible for us personally, and people around us tend not to believe us, still most of us have those that love us and would be willing to fight for us.

    But where to start? I am lost, especially because I am not a U.S. citizen. But honestly, if the U.S. (or any other country other than mine) found a cure or biomarker I have no doubt it would spread around the world in an instant. So I really think we can and should work together.
    lnester7 likes this.
  3. snowathlete

    snowathlete

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    I'd like to see the ME charities/Forums/Charities make a coordinated effort to get templates/contact details etc and make them very visible on sites/magazines etc and really push for patients/families and themselves to send in these letters/emails/facebook whatever at the same time.
    Most of us with ME arent well enough to write a letter and lookup details and even if we were, a single letter wont achieve anything. But a coordinated effort would probably have some impact. I've yet to see a well coordinated effort like done well and I think that's a bit daft.
    Sasha likes this.
  4. Esther12

    Esther12 Senior Member

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    We're in a really difficult situation, especially in the UK, where so many are instinctively disdainful of those with 'CFS' who try to make noise, and draw attention to the problems which surround the condition.
  5. alex3619

    alex3619 Senior Member

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    Hi snowathlete, there have been several attempts to establish a directory of template letters. So far they have tended to fizzle out. I think its needed, but to do it will require someone to set things up and get it started. Bye, Alex
  6. snowathlete

    snowathlete

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    I agree Esther, its a real problem. Thats why in my eyes it needs to be initiated by a recognised body, and it would need to be done in a profesional manner, rather than being done by just any old sufferer out there. I think making it an international effort would be beneficial too, even if that does make it more tricky to coordinate.

    Alex - yeah it needs to be done properly. In my mind i could do it, its the sort of thing i was good at once, but in reality i woudlnt have the energy to pull it off well. Same goes for most people with ME I think, at least the last part...
    Sasha likes this.
  7. Hope123

    Hope123 Senior Member

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    I would not put myself in the most severe category for CFS but neither am I a mild case.

    I've been able to complete a couple things by doing the following:
    1) Accept that it won't be perfect and that good is reasonable enough. I am a perfectionist at heart but I can change.
    2) Do a little but do it regularly. Big things can be done with small bites here and there. You know that old fable about
    the old man who wanted to move a mountain but only had a spoon? No one thought he could do it but a spoonful
    every hour for years does lead to success. Find a hero - a real person, personally known to you or someone famous - and get to know them. A lot of great people did not achieve overnight success; it took them years of effort and discipline. We only see the end product. Remember Nelson Mandela was in jail for 27 years before emerging
    as South Africa's leader. Remember Laura Hillenbrand -- she took 7 years to write her second book due to CFS.
    3) Prioritize. Figure out what you want to concentrate on, don't get distracted, say "no" to distracting things as possible.
    4) Find others with similar goals. There are definitely people involved with advocacy on this forum and offline. Many
    spoons move mountains faster. Join a local support group (in-person or online) if there is one near you; join
    national/ state groups.

    Too many people's greatest enemies are themselves -- others may limit you and you may have no control over it but you do have control over your own negative self-talk: I'm too sick, it won't be effective, I'm not smart enough, one letter won't matter, etc. etc. etc. The excuses could go on all day. A lot of people have great ideas and wonderful words but actions >>> words everytime. If you do something and it doesn't work out as you planned -- that's OK, learn from it and do better next time. To quote Mike Myers, from a very bad movie, "There is no such thing as failure; only early attempts at success."

    Write a post here everyday? Write one less post daily, use that energy instead to write a short letter EVERY day (or every week, or every month) to someone influential (your mayor, the local paper, your Congressman, your local medical school, etc.); sure, you may not get a response but you never know. Ask for their help. Be polite, be creative. I write people I don't know about CFS and I do get a response, mostly positive.

    In general, not just for CFS, people say they want this or they want that but too few are willing to do what it takes to get there. They wait instead for the result to fall into their laps or for others to do the heavy lifting. Ian Lipkin isn't the first scientist to encourage people with CFS to advocate more; Dr. Dan Peterson said patients weren't angry enough and they're both right.
    Dolphin, Roy S and Mark like this.
  8. Simon

    Simon

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    Action in the USA
    My impression from the video was that Ian Lipkin was asking for concerted action, now, in the US targeted towards politicians.

    He talked later about the imminent threat to the National Institute of Health's (NIH) budget so I think he probably has a wider concern about protecting life science funding generally. But with his examples of HIV and autism - both of which he has been involved with - he was arguing that greater funding for specific diseases was acheiveable, but only with aggressive action. As I live in the UK I wouldn't know how to go about that.

    Action in the UK
    It's hard not to get depressed thinking about the Uk situation for funding of biomedical funding for CFS. Certainly things have improved a little in the last year with the MRC's initial ring-fenced award for £1.5 m for biomedical research and and a subsequent highlight notice asking for more applications. Stephen Holgate, who was pushing things at the MRC was, like Lipkin, previously involved in increasing funding for other diseases - in Holgate's case it was respiratory diseases, another neglected area.

    But as for how exactly we go about a co-ordinated campaign to get more funding - dunno. As Esther12 has pointed out, noisy CFS patients are often seen as demonstrating that they are a problem, not that they are advocating for a solution. Not sure I'm cut out to be a campaigner.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    What about address or email addresses of local officials from the different countries where we can then all send emails etc voicing our concerns. I think if we all keep doing this, a letter once a week they will get the picture.
    What to say in it, i would mention studies already done confirming abnormalities and the need for more research. It would be good to have the info of how many have CFS/ME in each country to show how wide spread it is and with effective treatments these people could getback to work and add value back into the community eg after being treated able to work and pay taxes, also lower cost of health to the community in the long run etc etc.
    I dont think a long letter talking about how bad our symptoms are etc will help unless someone is a very good writter and can really pluck at their heartstrings.

    cheers!!!
  10. Tuha

    Tuha Senior Member

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    I think the best way how to be visible is to do big regulary demonstrations which is almost impossible in our case. I think there is another way how to get authorities attention. Do you remember that "What have you done for ME" campaign 1-2 years ago. Around 1000 people were writing every day emails/ letters/calls to NIH and other authorities and they were really annoyed of us. And they had big problems with their emails and everything. it´s really not easy if you get 1000 emails a day. just pity that we finished too early after some cheap promises. I would start similar campaign at least in US, GB, EU. We should write a simply letter with few phrases that we are asking about parity in funding. And then I would start this campaign with sending emails, letters with that text and calling and finish it only when they will put more money for ME/cfs. I was working for state and there were similar campaigns and I can tell you that we had always big problems with this and if the campaigns took for a long time we almost always lost and had to do what the campaigners wanted. I have impression that the situation in US got better and that they take our disease seriosly but without giving more money. we can see that with nice behaving we will not move forward. We have to start to annoy our authorities.
    justy, heapsreal and lnester7 like this.
  11. SpecialK82

    SpecialK82 Senior Member

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    I been thinking about this issue for a bit, and what I always come back to is, the lack of a cohesive voice from the ME/CFS community.

    I am thinking about starting a project that would link all of the individuals, support groups and organizations around the world into one communication network. If we could all "meet" in one place, and we could coordinate political action, how we could we not be a powerful force? I know that we have minor differences between organizations, and I'm suggesting within this network it would be irrelevant. We all agree on the most basic issues, and we would fight for these together.

    I really need people that would like to brainstorm with me to determine if such an idea would be feasible. Let me know any interest.
    Nielk likes this.
  12. alex3619

    alex3619 Senior Member

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    HI SpecialK82, I want to organize a similar project, but not just for ME or CFS, but for all neuroimmune diseases. One voice for all gives far more power. However my focus is in media interaction, though its possible to expand that focus. Bye, Alex
  13. Hope123

    Hope123 Senior Member

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    SpecialK82, there are a group of individuals and people representing US ME/CFS groups from different states on a private e-mail list that discuss actions on a national level. The groups and individuals have different viewpoints but can agree and have agreed on some common goals. One recent ongoing project is working to get the US Secretary of Health to meet with patients/ patient groups; a petition was organized and signed by a number of different people and 18 groups as you can see below. Another project was pushing FDA to look at accelerated approval of drugs for ME/CFS -- that resulted in the FDA-patient teleconference September 13.
    If you want to join, PM me and I will connect you with Mary Dimmock, one of the main organizers.
    http://www.change.org/petitions/dep...dinated-and-fully-funded-response-to-me-cfs-3

    Some of the groups presented at CFSAC earlier this year:


    And more will present on Day #2 of the CFSAC meeting next week, Oct 4, at 1:30 EST. The meeting sounds like it will be broadcasted online but details are not known yet.

    For people who want to join a local support group, here are some national and international resources. Some groups are more advocacy oriented than others but if you join one, YOU could be the one to start something on an advocacy level and might find willing supporters in those groups.
    http://www.cfsknowledgecenter.com/support-groups.php
    http://www.iacfsme.org/Links/tabid/96/Default.aspx

    Doing stuff on an international level has its merits but different politics, healthcare systems, medical training, etc. makes it difficult to have coherent methods even if some of the ideas are similar. I help an international group and we face those sorts of challenges. People in the US groups above and myself do communicate with European groups though.
  14. Gemini

    Gemini Senior Member

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    At the XMRV results Press Conference last Tuesday, Ian Lipkin made a strong appeal for people to put pressure on politicians in order to secure more funding for CFS.

    Robert Miller proposed ME/CFS research funding be set at $100 million per year at the June 2012 CFSAC.
    I've submitted testimony for the Oct 3-4 CFSAC in support of his recommendation.

    As a united effort the worldwide community should get behind Bob's recommendation.
    Simon likes this.
  15. SpecialK82

    SpecialK82 Senior Member

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    Alex - I'm open to exactly what this group would accomplish. I like the idea of pushing on government and the media. Also possibly, a concerted effort on fundraising (contests, etc.) I would like to explore the pro's and con's of each piece with a group.

    My main idea is just to build a network where absolutely everyone with ME/CFS is connected, either individually or as a group member.

    Then I would like the individual members to be able to set their preferences:

    - Do they just want to hear about politcal action for their country?
    - Do they want to hear about every country, and how they can help?
    - Would they be interested in participating in contests if easy instructions were included in a communication?
    - etc.

    Preferrably the members could adjust the preferences at will.

    It would be a good idea to include all neuroimmune diseases, we would have more overall members, and we could always ask as a preference if they only want to hear about ME/CFS, Gulf War Syndrome, etc.
  16. SpecialK82

    SpecialK82 Senior Member

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    Hope - thank you for the reminder and all the great info that you provided. Yes, I did see patient groups working together at the last CFSAC and I was so happy. Also the recent FDA stakeholders meeting - Outstanding work by patient organizers. I wasn't aware of the contact point for this effort, and I will PM you to get connected with Mary.


    I definitely do not want to duplicate any efforts on this front and am looking to assist in any way that I can. My main goal is that we all work together! :)
  17. Uno

    Uno Senior Member

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    Alright folks.

    I am in the UK and it seems that over the last few years, the louder we shout, the more nasty press we get. I presume Max Pembleton and Ben Goldacre plus the latest from the Daily Mail's Michael Hanlon have been seen on this forum? If not I'll find the links later on as I have to go out. The death threats scenario has been dredged up yet again - we're darned if we do and darned if we don't.

    From our personal perspective at Neuroimmune Alliance, we are pushing ahead with fundraising for our education and awareness campaign, knowledge is power.
  18. Jarod

    Jarod Senior Member

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    Interesting video. One question: Any idea why Autism funding got increased for the department of defense? @6:00 in video

    He made an interesting case for funding. Sounded like he was advocating for everybody to make noise just to keep the existing government research funding alive? Anybody get that?
  19. Simon

    Simon

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    I agree he was advocating a big noise to protect existing govt research (where substantial cuts are being proposed). But he was also saying that such noise could still lead to more focus on specific diseases within existing funding.

    I think that at one point he says that while NIH scientists most like to work on basic research, political pressure could lead to them doing that within the context of specific diseases. And example could be studying aspects of the immune system e.g. Cytokines, or even the host response, within CFS.
  20. Snow Leopard

    Snow Leopard Senior Member

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    I don't want to judge too much, but it is the wrong sort of noise. What we need is quality. I've read many of the comments on those articles and I can't say that many of them were either necessary or to the point. Imagine if just the highest quality comments were posted?

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