Problems with 'our' M.E. (or CFS, CFIDS or ME/CFS) advocacy groups This paper looks at the problems with our advocacy groups, and why so many of our groups are not engaged in useful advocacy and what we can do to help change this.
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Copyright © Jodi Bassett October 2007. This version updated December 2011. From www.hfme.org
Many advocacy groups started out doing excellent work for M.E. sufferers by fighting labels like 'fatigue' and 'CFS', but now actively support those labels. The legitimate research which is being done by small but dedicated groups of doctors is too often ignored. This reinforces ignorance of even the most basic facts about M.E.
It is very common to read information produced or supported by advocacy groups which does not contain any facts about M.E. At best, information on M.E. is mixed in randomly with information on 'CFS' as if they were one and the same. These groups parrot the information perpetuated by vested interest groups, no matter how illogical or inappropriate.
The vast majority of 'CFS', 'ME/CFS', 'CFIDS' and 'Myalgic Encephalopathy' advocacy groups in Australia, the UK, the US, Canada, New Zealand, the Netherlands and all around the world are not involved in legitimate or useful advocacy for patients with Myalgic Encephalomyelitis.
Are some groups better than others?
There are groups doing some good and worthwhile work for their members, and a very small number of groups which are misinformation free and do make the full and proper distinction between M.E. and 'CFS.'
Then there are groups which support unproven or dangerous treatments including graded exercise therapy (a harmful and potentially fatal 'treatment' for M.E., and the reason many are so severely affected in the first place). These groups are wolves in sheep's clothing.
The largest number of groups are somewhere in the middle. They may provide a percentage of good information, but unfortunately it is combined with misinformation. Some groups accept anything labelled 'CFS' as being useful and relating to their members; other groups accept anything with 'CFS' on it which is not psychiatrically-based as being useful, no matter how flawed it is, or how irrelevant.
Groups such as the MEA, AfME, Invest in M.E., MERGE, PANDORA, Phoenix Rising, CFS Knowledge Center, the Coalition 4 ME/CFS, ESME, all of the Australian and New Zealand CFS/ME or ME/CFS groups, the US CFIDS groups CAA and NCF, the Whittmore/Peterson Institute (plus each of the XMRV groups) and countless others, should be approached with caution.
Are these groups being run by or for people with M.E.? If they aren't, are they at least helping people who have been diagnosed with CFS?
The vast majority of the members of these groups do not have M.E. but instead a wide variety of fatiguing illnesses which are commonly misdiagnosed as 'CFS.' M.E. sufferers are often ignored almost entirely, despite the fact that many of these groups still claim to advocate for M.E. in some form. This also negatively affects all those with various conditions misdiagnosed as 'CFS.'
The 'facts' these groups endorse don't relate to M.E., and the opinions proffered on matters relevant to M.E. sufferers do not deserve to be given weight. Very often such groups support projects which threaten the long term health of people with M.E.
Some advocacy groups are staunch defenders of the status quo, in which people with M.E. are denied appropriate treatment and compassion from the community, and in which people with a wide variety of fatiguing illnesses are misdiagnosed as having 'CFS'. These people are also denied appropriate diagnosis and treatment, and may also be encouraged, or forced, to submit to inappropriate and useless psychiatric treatments such as CBT and GET.
In many ways, these groups have ensured that misunderstanding of M.E. continues unabated, and that the community remains ignorant about even the most basic facts of M.E. The problem is not that these groups are not doing enough good work, it is that many of these groups making things significantly worse for patients.
So where do we go from here?
Genuine M.E. advocacy groups must:
1. Reject 'CFS' definitions (including the Canadian ME/CFS Criteria and the ICC) as irrelevant to M.E. patients, and adopt the Nightingale M.E. definition.
2. Withdraw support for treatments which are inappropriate for M.E. patients including CBT and GET.
3. Use the term Myalgic Encephalomyelitis exclusively, and make it clear that M.E. and 'CFS' are not the same.
4. Only endorse information relating to M.E. which tallies with the history and known medical facts of M.E. (as per the work of Drs Ramsay, Dowsett, Richarson and Hyde).
5. Oppose claims that studies relating to fatigued individuals have any relevance to people with authentic M.E.
6. Work for and with genuine M.E. sufferers to improve their lives in a transparent and positive way.
Thank you to Emma Searle for editing this paper.
Copyright © Jodi Bassett, January 2009. This version updated May 2009. From www.hfme.org
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