Why don’t people abandon support groups with bad policies?

Recently I read an article by Jodi Bassett, a campaigner on ME issues who suffers from the severe form of that illness, on the Planet Thrive website (it’s also posted on her own site) entitled Myalgic Encephalomyelitis: The shocking disease. It lays out a few facts about the illness, its similarities to MS and polio and the lack of money being spent on research, etc., and then outlines the things someone might find shocking when they go down with it, including the severe disability it brings, the lack of support from the medical establishment, the possible lack of support from friends and family, and finally the inefficiency of ME support and advocacy groups. This latter point is a huge issue for her: that in most countries, the major “ME charities” accept definitions of ME that aren’t limited to actual ME and accept government guidelines that include advocating “therapies” that are often ineffective and can be very harmful. One of the “shocks” she complains of is of finding that many ME patients are still attached to these groups:

Almost all ‘our’ charities have sold themselves off to the highest bidder, and are now working to promote the same harmful misinformation they were created to fight against. These groups claim to be representing a large and diverse patient group but in reality they do not work for the benefit of any group, except themselves. These groups often take advantage of patients’ lack of ability (or unwillingness) to engage with politics, to read and assimilate significant amounts of slightly complex text and of their goodwill and trust in the most cruel way. Many patients put all their faith and efforts into this false advocacy, led by vested interest groups. Many (perhaps even most) fellow patients are, unwittingly, working directly against their own interests and aiding their abusers. Many seem determined to support the same old illogical nonsense that is the reason that no progress at all has been made in over 20 years. Perhaps some patients are too ill to even investigate other sources of information than the charity, or they have taken the charity’s word for it that the (entirely bogus) information they provide is all that exists. These sell-out groups and individuals are at fault here to a large extent, but at the same time they couldn’t keep doing the evil things they keep doing if they didn’t have so much (undeserved and unwise) patient support. It’s so incredibly shocking, and frustrating.

We have a number of groups which were set up to advocate for ME sufferers in the UK; the best-known of them are Action for ME (AfME), the ME Association and the Association of Young People with ME (AYME). The latter group in particular specialises in keeping younger sufferers (i.e. children, teenagers and adults up to age 25) in touch, so as to break the isolation that ME, and particularly severe ME, causes as it often results in long-term absence from school and to the patient being cut off from their old friends. Often, the only friends someone will have will be fellow ME sufferers who don’t live locally, or even in the same country, but who communicate through letters, email or blogs. AYME are not the only group that does this; there is also the Tymes Trust, run by Jane Colby, a former head-teacher who spent four years bed-ridden with ME, but originated as a magazine entitled “The Young ME Sufferer” and run by two young people with ME.

In an article recently posted to the Hummingbird Foundation website (most of which is written by her), Jodi Bassett specifically named AfME and the ME Association as being one of the groups which are “not involved in legitimate or useful advocacy”, have “sold [ME sufferers] out to the highest bidder”, which benefit from government funding due to following the official line, and which produce information which, at best, mixes information on genuine ME with material relating to other illnesses, and benefit only themselves and the vested interests they serve. She does not mention AYME, but in the UK they are generally regarded as being in the same camp as AfME. This recently led to the resignation of one of their patrons, Nigel Speight, a doctor who has long been an advocate for families of children with ME (who have often faced hostility from doctors and social workers, who accused them of faking or encouraging their children’s illnesses). He has worked with the Tymes Trust for many years, and is now a medical advisor to the 25% ME Group, which represents people with severe ME (i.e. those who are housebound or bed-ridden). In his letter, reproduced here and in the 25% group and Tymes Trust newsletters, Speight wrote:

AYME seem to have become more willing to collaborate with the medical and psychiatric establishment in order to appear respectable. This appears to have been the cause of AYME’s relative enthusiasm for the NICE Guidelines, which most of us feel involve an overemphasis on CBT and GET. This compromise seems to have helped the psychiatrists to get a new lease of life. … I have gained the impression that AYME no longer appreciate my opinions and prefer my status as their figurehead to be a largely silent one.

However, plenty of ME sufferers remain affiliated to AYME, including many who are severely affected. AYME recently produced a book, Severe ME/CFS (sic): A Guide to Living, by Emily Collingridge (interviewed here and here) who has severe ME and is mostly bed-ridden (she went through an extremely severe phase lasting from 2005 to 2007 and had a major relapse recently). They are selling the book at cost, with a subsidised discount for severely affected members (I saw a forum post in which someone said they wouldn’t buy the book if AYME would actually benefit from it). So, why do people remain with them if they are selling out people with ME? Part of the answer may be years of goodwill, but it may simply be because, as a friend who is working with them told me, the work they do in keeping young ME sufferers in touch with each other and breaking the isolation that ME notoriously causes is invaluable. She also confirmed that there was a lot of disquiet among the membership about the issue of inappropriate therapies being advocated or over-emphasised, and that one of her friends had had her health irreparably damaged in the early stages of ME by one of these therapies (Graded Exercise Treatment or GET), but simply abandoning AYME because of the public positions the group takes is not an option. No other group, including the Tymes Trust, has the infrastructure that AYME does. They do, as their name implies, support young people, but mostly through advocacy in the education system.

I accept that Jodi Bassett does not publically criticise or condemn AYME, but it is obvious that AYME have lost a fair amount of goodwill in sections of the British ME community. Jodi suggests that groups like AfME should close, or else simply stop claiming to represent ME patients; this is not an option when it comes to AYME. There has been much disquiet in the British ME community over AYME’s stance regarding the officially sanctioned CBT and exercise therapy, not only represented on blogs by individual ME sufferers but also through organisations supported by the world’s leading ME experts. Perhaps individual members can ignore these issues and still make use of AYME’s services, or are too needy to do otherwise. The only solution is to work for reform from within, or for those in the know to tell other members what they know and warn people if they are directed towards inappropriate therapies or therapists with bad records.

How much this is true for Action for ME and other “mainstream” ME advocacy groups I couldn’t say, but they would certainly not be the only disability support or advocacy groups whose members are dissatisfied with the policies of some of the leadership — I have heard blind people say that RNIB, the initials of the main British blind people’s organisation, should really stand for “Read Nothing In Braille”, “Really Not Interested in the Blind” and even “Really Nasty Ignorant (fill in the blank)”, and the debates between advocates of the National Federation of the Blind (NFB) and American Council of the Blind (ACB) in the States can be seriously acrimonious. Perhaps some of them perform differently, at the local level, from district to district and perhaps this can be said of the local ME groups affiliated to AfME in the UK as well. Still, they can’t be just done away with without there being a strong replacement. After all, we can agree that a building is a terrible slum, but if we just tear it down, we just leave a whole lot of people homeless.

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