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.
..
Through their actions and non-actions, I have believed that most of our support had been co-opted, or were formed to earn big money. I'm not speaking of our experts. A lot of people and companies saw this as a money making venture long ago. They dug in and left us out or just through us some measly bones.
(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.
