Ten things severe ME sufferers wish ME societies would do
By Ricky Buchanan ricky@notdoneliving.net, with thanks to Jodi Bassett, Sharon O'Day and other severe ME sufferers for additional suggestions, 6 February 2006
Permission to copy for any non-profit purpose is given. Please pass this document on to your own ME society... I would love to know if you see results!
As a person bedridden with very severe ME, what services would I like my local ME society to provide? After many discussions with other severe sufferers, we have come up with a list.
The list is not in any strict order, but in general we think that the items near the top of the list could be implemented with the least fuss, and done most quickly.
1. Make it known via newsletter and other means that you recognise a percentage of the members are homebound/bedridden and that henceforth, you are going to cater for those members too!
2. Advice given about any treatment for ME should always be appropriate for every sufferer (including the severly affected) or an explanation should be made explaining why this is not the case. Comments such as "there is no need for extended bedrest in ME" are completely inappropriate considering that 25% of people with ME are severely affected and are homebound or bedridden. For these sufferers being bedridden is not optional and advice to be more physically active can lead to very severe and avoidable relapses.
3. In *everything* that you do, make a serious effort to cater for those who can't leave the house. Publicly apologise if it is not possible to include homebound members - eg for a society picnic. By publically apologise, I mean whenever and wherever you advertise the event.
Catering means, for example, audio or video tapes (and conference calls linked via speaker phone if possible) of all events made available in the library via mail, and available as soon as possible after the event, and reserved for the homebound if too many people want to see it. That should include the AGM, and other events run by the society. Advertise that you are doing this as you advertise the event.
This does two things - cater for more members, and publically recognise the severity of ME. For example, if you do a radio or TV segment and you include this information as a matter of course, you are sending a message to the public about how severe ME can be.
4. In society activities which are accessible to the homebound/bedridden, give preference to those members if you have to limit numbers. Advertise that you are doing it, and explain that is because not all society activities are accessible to all.
5. Lobby government for services and research for this segment of the ME population. Research targeted at severe sufferers is virtually absent, and sorely needed.
6. Work to educate appropriate services such as HACC, RDNS, NILS, Linkages, and the DHS, about the potential severity of ME. Lobby these services to recognise severe ME sufferers as eligible for their services.
7. Work to educate services (as above) about the special needs of severe ME sufferers. For example, house cleaning might have to use special non-chemical cleaners, and all services need to know about light/sound/touch hypersensitivity. Education must also alert services to the potential for intermittent or fluctuating needs for service or levels of service by sufferers.
8. Educate severe ME sufferers about the services (as above) that are available to them, so sufferers know that help is available. Be prepared, when necessary, to act as an intermediary between severe ME sufferers and services - those with severe ME may not be able to communicate their needs adequately.
9. Lobby services and appropriate government sectors to fill gaps in service provision - where a service could be of use to severe ME sufferers but is not available. For example, respite care with a chemical-free policy.
10. Educate the public about the potential severity of ME, including the potential for fatalities.
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Ricky Buchanan -- ricky@notdoneliving.net
