Maybe someone could contact the author about the continuous use of 'chronic fatigue' in such articles that only add to the problem of proper recognition.
I’m grateful to anyone who puts themselves forward for a media interview. But in the video clip, the wording seemed to give the impression the extra expenses were holistic health therapies like massage and acupuncture, which some might consider non-essential.
Have written to request a change of headline and also suggested a few options for replacing the link to the NIH with a NZ source.
Yes. I considered mentioning the video in my email but chickened out. Didn't feel comfortable criticising another patient. But you're right, the video is misleading. Whether that's more due to editing or more due to the patient not having enough awareness of how the things we say can get (mis)interpreted by viewers is hard to say. It should be the job of journalists to ensure sensitive coverage of stigmatised illnesses rather than the job of every patient brave enough to step forward to have to undergo media training first.
Signed. Very easy. Takes about 2 seconds to do.
Yes, it is very easy. And the petition is very straightforward in its request.
I agree that that segment of the message was a problem in what was otherwise a good video clip. I think ANZMES and other patient organisations have a role to play in preventing statements like that. Sick people desperate to be well and with no medical background should not have to do the heavy lifting when it comes to trying to work out whether acupuncture or yoga or massage are going to be useful treatments.
https://anzmes.org.nz/what-is-me/frequently-asked-questions/
Haven't been able to find anything conclusive but the fact that these organisations are listed on this page would suggest these conditions are classed as 'disabilities'. MS is on the list so that would make a good argument that ME should be, too.
It's a bit better, but it still doesn't link to a government page that lists specific health conditions that automatically get better treatment. I think the petition is worth signing, but someone must have that information in order to feel that a petition is worthwhile. I think ANZMES, as the petition organiser, should be specific about where they want ME/CFS to be listed.
No, they are currently disseminating information that is not evidence-based. With them endorsing the use of acupuncture and advice that essentially amounts to GET, they are not acting as my voice.
I'd be surprised, as it lists all sorts of disabilities including "stress". Also, ANZMES said that the reclassification would enable people with ME/CFS to access help with housing costs and home help. The Disability Allowance doesn't cover that, it's mostly related to the costs of going to the doctor and prescriptions. Maybe there is another list that suggests that certain disabilities should be regarded as permanent. I've tried googling a bit, but didn't find anything.
