1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Time Change Equals Jet Lag, ME/CFS Style
Jody Smith marvels at how much difference one hour can make to those with ME/CFS, as much of the world has endured The Time Change in recent weeks ...
Discuss the article on the Forums.

How MS activism was successful

Discussion in 'Advocacy Projects' started by taniaaust1, Nov 22, 2012.

  1. taniaaust1

    taniaaust1 Senior Member

    Messages:
    6,745
    Likes:
    3,321
    Sth Australia
    Izola, beaker, Enid and 2 others like this.
  2. MishMash

    MishMash *****

    Messages:
    446
    Likes:
    476
    Georgia
    Very interesting. John F. Kennedy raised money for the National MS Society in 1958. That's an interesting bit of trivia.

    All they had to gone on were symptoms, and autopsy studies after the fact. Now they have MRIs to show lesions. ME/CFS needs a biomarker like that.
    vli, Izola, merylg and 1 other person like this.
  3. taniaaust1

    taniaaust1 Senior Member

    Messages:
    6,745
    Likes:
    3,321
    Sth Australia
    Making Illness Visible

    I'll do a brief run down of the events in that link to which lead to MS being fully accepted and well known for those who are unable to read all the info on link.

    --

    - Voluntary organising and forming of voluntary health associations has dominated disease awareness education eg American cancer society, American heart association etc. "These groups have engaged in natural crusades to educate the population about disease, for disease prevention and to raise huge amounts of money for medical research." The National Multiple Scolosis Society (NMSS) modeled itself on those groups.

    - By 1930-1940s Neurologists were considering MS to be a common neurological disease but the illness wasnt in the general publics awareness. It thou was gaining attention at Neurological level and increased studies on it were getting into medical journals.

    - How the NMSS was formed.
    A lay person in her 20s, one who had a brother with MS put an ad in newspaper asking a question on MS from others with this and got 50 replies, these people then all started corresponding, they started to hold meetings and decided to form a National org. dedicated on finding a cure for MS. They then got family and friends to enroll in their org, then they advertised in a newspaper and got more members.. in a year they'd gained 600 members, 2 years later they had 7,500 members. By 1949 15,000 member.. by 1958 they had 120, 000 members.

    The founder of the org appointed a board of directors and a medical advisory board from lay people and prominent medical field people.
    Research was done to work out who was the most prominent researcher in the field (who also was very high ranking..director of things and professor) and that person was choosen to be the first chair of the medical advisory board.

    This is where I see things going majorly wrong for ME/CFS.. our orgs arent carrying any weight as medical advisory boards and really arent doing much at all in this area.
    (Dr Wessely alone seems to carry that weight .. if one person is managing to carry that weight without a big org backing, why on earth cant our orgs get it together to get prominent medical people in them doing ME research on their boards to enable our orgs to be carrying more weight?) We have a big LACK in this area which isnt doing our advocacy good.

    . . As scientific attention grew .. the NMSS sponsored and initiated scientific conferences. Another org (Assoc for Research in Mental and Nervous Diseases) devoted its annual conference to MS. The NMSS was still sponsoring symposiums throu the years. These efforts made MS a research priority in the field of Neurology and increased the interest of other neurological orgs into the disease. By 1960 the NMSS as funding 72 different research projects.
    "The expension of research into MS predated the the federal interest into the disease.

    "Impetus for the first great wave of concentrated effort and research on a wide scale came from a group of laymen who founded the NMSS". "Lay activists made MS a research priority in Neurology and were directly responsbile for the increase in research".

    "NMSS Was first patient activism group to "mobilize around an illness of which there was no clear epiology, case definition or diagnostic test" . This group focused much of its funds on raising biomedical research" while at the same time having to "promote support for an illness which had much uncertainty". So had to take on an activist role of raising public consciousness of the disease and making it Visible. This org encouraged and shaped the direction into biomedical research.

    We dont strongly have that going on. Our big orgs are often far too laid back, over the years they should of done far more, if anything most of our orgs have made things for us more messy.

    - NMSS enlisted the support of prominent Americans who had some experience with MS sufferers

    We dont have any prominent people supporting us except one.

    -NMSS linked itself to a medical subspeciality, that being neurology.

    Unfortunately while the fight goes on between distingishing ME and CFS.. I doubt if we could be linked to neurological as so many CFS patients dont have have what is probably a neurological illness. If ME gets separated from CFS.. the above could happen has ME is already recognised by WHO as being neurological if ME was separated, it would probably be an almost instant acceptance into the neurological field..

    - NMSS "sort to actively gain and shape media coverage of the group's illness. "The NMSS was highly successful in getting MS into the national consciousness throu articles in popular media such as Readers Digest."

    I havent seen our orgs doing much media stuff.. this is an area in which we are certainly beiing majorly let down. They only seem to do media stuff when there is a breakthrou (last one I can remember was XMRV). Where are our orgs talking to the media about severe ME/CFS patients? Hardly ever if at all.

    - NMSS had to "gain a seat at the table" one could say, where the decisions on the allocation of research funding were made. They "were highly successful at this activity, virtually dominating research on MS throu its connections with the National Institute for Neurological Diseases and Blindness.

    A breakthrou in this area would be huge to us..but i have no idea how it could happen. Just imagine if we could dominate the funding so that it ALL goes into biomedical research and stops going into psychological waste of money stuff.
    ..

    (there is more in that link but I cant read any more.. may add more in here later when Im more up to reading the rest).

    Is our current orgs up to changing to do the kind of things the NMSS did? (they are currently lacking in so many big areas where they should be doing impact) or do we need a new big national org.. dedicated like NMSS was in finding a cure? (and all the thing which go around that).

    Maybe groups need to get together and form National ME orgs. (getting rid of the CFS crap.. you could refuse to join CFS orgs or orgs which support GET!! People could walk away from CFS and to ME org.

    Put ME experts on the medical advisory board of the ME org and use the new International ME definition. With a new ME org with the support of ME experts. and ME definition. we should end up finally getting the neurologist (or it could even end up being immunoligist) backing we need to get our illness taken seriously. or even better maybe we could form a big INTERNATIONAL ME org. so it would be even bigger..

    Seeing our orgs wont separate ME and CFS and keep lumping them as one.. maybe the patient group needs to be starting a new big ME org for ME. I personally see this as possibly the only way to go forward (unless we want to wait another 10-20 years for them to scientifically very slowly work things out with lack of funding as not enough are taking this illness seriously.. I personally doubt i'll still be around in 20 years time). New org to fund ME studies and to advocate.

    All I know is that the current National orgs have been failures for us.. with even the bad general public perception still there.. and one person (Wessely) having control over ME info.
    vli, medfeb, Izola and 5 others like this.
  4. Sasha

    Sasha Fine, thank you

    Messages:
    6,982
    Likes:
    4,542
    UK
    Thanks, Tania - although I was the one who posted that link, I wasn't able to read the document so that summary is very welcome. Your commentary is great!
    peggy-sue and Izola like this.
  5. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    1,943
    Likes:
    1,337
    Somewhere near Glasgow, Scotland
    Wessely and AfME and some others were I think, used as "blocks", we don't have gulags and torture rooms
    no, our leaders "sidetrack" any issue very very effectively
    Some issue is a problem? Well you put your OWN people at the head of the committee!
    only let YOUR experts get media attention! etc.
    thus we are silenced

    go read up on the tobacco companies's strategies and tricks, UNUM etc, and realize we are NOT living in "Democracies": we are living in Corporate Fascist states evading revolution by a pretend veneer of democracy, but they prevent change, their "duopoly" of parties are the same underneath, etc.
    We're just yet another victim group no one but us has noticed yet.
    peggy-sue, vli, Izola and 1 other person like this.
  6. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,120
    Likes:
    1,355
    London
    Tania, thank you so much for posting this. I've printed it off to read and I am slowly digesting it. Great inspiration and something I've been hoping to find.
    Izola likes this.
  7. Izola

    Izola Senior Member

    Messages:
    300
    Likes:
    263
    My MRI shows lesions. I bet a jot of our brains do.
    PennyIA likes this.
  8. Izola

    Izola Senior Member

    Messages:
    300
    Likes:
    263
    Oligarchy.
    vli, SilverbladeTE and ggingues like this.
  9. lnester7

    lnester7 Seven

    Messages:
    1,034
    Likes:
    855
    USA
    This is the best read I have had in a while, because is a great idea to do an analysis of all the succesful organizations, how they got there and what we can do for our desease so we can move faster. A roadmap to success.
    vli and Izola like this.
  10. Izola

    Izola Senior Member

    Messages:
    300
    Likes:
    263
  11. Izola

    Izola Senior Member

    Messages:
    300
    Likes:
    263
    .
    Our support system was never really cohesive. Tha CAA popped up and said they suported us. I never could figure out just what they were doing. Then they started talking about child abuse and on and on. Still don't know what they did for us. They did get cozy with the NIH.

    Others sold vitamins and supplements and had articles on their site. No cohesiveness there.

    A whole hell of a loy of others start out with ". . . Then, after 6 months . . ." That's where my trust alarm screams, "Don't go there . . . "

    My judgement is what brought us together are the experts.
    they're the ties that binds. One great example is the Dallas/ Fort Worth suport
    group.Carol Seiverling (w/ Dr. Cheney's support) laid out for us his findings & recommendations. Dr. Peterson did the talk ciruit for patients. And very quietly built up a cohesiveness with other experts. Dozens of others did what they could in similar manners. They built our knowledge bases.

    Cort started this amazing site. I don't agree with him on everything. I do have a big thank you in my heart for him. And he contiues on gathering information for us.

    Name-US.org stood their ground and feel like the firstborn twin to us.

    Now we have to get over little turf battles inside. The little one that will bleed us dry.
    with the big ones outside waiting to gnaw on our bones.

    We're probably not going to bridge the CAA gap for a while. Time will tell.

    Meanwhile, let's treat each other kindly. We're all ill to some degree or another. Some us are half dead.

    We're getting close to cohesiveness. Let's not blow it. Egos can do that, you know.
    peggy-sue likes this.
  12. Izola

    Izola Senior Member

    Messages:
    300
    Likes:
    263
  13. Izola

    Izola Senior Member

    Messages:
    300
    Likes:
    263
    The well done piece on the history of MS Was done by TANIAAUST1 and Not by Izola. Iz
    Last edited: Jan 1, 2014
  14. Izola

    Izola Senior Member

    Messages:
    300
    Likes:
    263
    Many of us already show punctate lesions in our frontal lobe. They are somewhat different than in M.S. Nontheless they are holes in our brain along with all the other strange things that go on in our brain,
    NK17 likes this.
  15. Izola

    Izola Senior Member

    Messages:
    300
    Likes:
    263
    In 1994, a group of researchers put together a large volume of research (Check out the Nightingale Research Foundation w/ Dr. Byron Hyde web site) They knew a lot back then. One of the research articles talked (Dr. Peterson. if I remember correctly) about the punctate lesions they were finding in our brains. In March I said, in response to discussion of MS how to get noticed topic:

    "Many of us already show punctate lesions in our frontal lobe. They are somewhat different than in M.S. Nontheless they are holes in our brain along with all the other strange things that go on in our brain,"

    I don't know what happened to the rest of my sentence/paragraph. Maybe it fell out of one of the holes in my brain.

    Is this an old long ago discussed and dismissed
    with cause topic? And I never heard about it??

    Am I the only one who noticed that we have potentially thousands of people who can say "yes" "No" "Did not have MRI" or "Inconclusive." ? I imagine there were a lot of others who noticed but it was a busy day and our brains leak. Mine did. Thank you vli for bringing me back.


    And that this potential resource for collection of information is important. Maybe it will dead end. We won't know until we ask. Check out the recent results of IACFS/ME-- there is more than fog in our brains. Or have you all done it and I missed it?

    Our experts have carried our weight for decades. It would be nice to hand them a little packaged information that may or may not point to an avenue for further research but either way will lighten their load.

    Let's do this tiny bit of pre-research info collection. A pre-rule in/rule out exercise. We did polls regarding IOM HHS. I'll donate half my grocery money for 3 months to defray some expenses & figure out what else I can do. I think a "poll" set up would work. Or a very short research mini-questionnaire.

    I know I am a pain in the arse (thank you Silverblade TE, I have a new word.) and am not in tune socially, dispense with the delicacies of social discourse and impatient when goal oriented.

    I have always been a path finder. That's important. I see a path that needs to be trod. Izola

    NK17, peggy-sue and SilverbladeTE like this.
  16. vli

    vli

    Messages:
    1,165
    Likes:
    1,250
    CA
    What can we do about our orgs though? What can we do to reshuffle orgs like the CAA? For UK in particular, how can we dismantle Simon Wesseley? To dismantle him would need irrefutable proof that this is a physiological disease; unfortunately this is asking more of us than it did of MS sufferers (whose illness was accepted before MRIs and spinal taps were possible). To provide such proof we need research, and for research we need $$; for substantial research we need government funding. It's starting to look like a vicious circle, because we lack funding because the govs won't take us seriously, because we've been branded psychosomatic.
    peggy-sue likes this.

See more popular forum discussions.

Share This Page