At last! A press article on ME/CFS that is accurate and informative

[M Paine]

If anyone is talking to Ros, maybe a good question to ask might be if we could somehow put a resource together of recommended GP's. I think we all understand she will likely stop practicing soon.

 

[daisybell]

If anyone is talking to Ros, maybe a good question to ask might be if we could somehow put a resource together of recommended GP's. I think we all understand she will likely stop practicing soon.

I wish we knew if she had a succession plan....

 

[Jill]

Alan lights study. I foun

Sure thing. I see Julie Hancock at CityMed on Albert Street in the CBD. She is not a CFS expert on the same level as Ros, but she's understanding and makes a genuine effort. Ros actually mentioned that she thought Julie was a very good Doctor, so they must know eachother. The reason I think she makes a good Doc is that she is fairly empathetic, and willing to take suggestions and allow a bit of self guided treatment. Most of the prescriptions I get from her have been things I have asked for. I guess that's not everyone's preference, but it works well for me. She does seem to have a fair amount of CFS patients it seems.

It sounds like the Counties Manukau District Health Board are acknowledging the issue, I think that's a good response. I agree that patients not being believed is probably near the top of the issues list, I don't know about the excercise thing and how prevalent that is in NZ, but sounds like a good idea too. Even just getting the message across that the wrong kinds of excercise is detrimental to patients. I know I would have liked to receive that message sooner than I did.

What is the light study you mentioned?

Cheers -M

just quickly for now- the lights are in Utah and he's shown how cytokines and other baddies are pumped out abnormally when you exercise CFS patients. The levels and the patients subjective reports correspond. Some patients crap out for 1,2 3 days and the blood results show the same. Ie patients aren't making this up. I found it on utube the other night . It's a discussion between Podell and alan light . Podell is a big name more in fibro . If Google now but need to rest. Will try to copy paste later .
Til then

 

[Jill]

This is the first segment of 3 of Alan lights work in Utah @M.Paine

Please start a new thread if this hasn't been on here before . I've not been active in a long while. Need to reread how to tag people etc

 

[Jill]

I wish we knew if she had a succession plan....

I brought this issue up with the anzmes committee, and that along with some other issues made them get the proverbial with me. I suggested they send someone else to conferences and they said no other Drs really interested. I suggested this was rubbish and that they ought to advertise and see what response they got. This was about 18 months ago.
I keep up to speed because currently I know no Drs that do. Ros just prescribes what I ask for basically. Infact I don't think she's ever suggested anything new . It always comes from me .

Perhaps one of you could ask anzmes about the subject as they prob won't respond to me .

Hey if you are in Auckland there is a new support organisation called Auckland ME. Free to join and they've just employed a fieldworker for 10 hrs a week.
They will hold a Drs list - prob not many Drs on it though , so your input is welcomed

 

[M Paine]

Thanks for the Alan Light links.

That ME Auckland support organization sounds good, especially the field worker...

From http://www.meauckland.org.nz/

Field workers can advocate for you to receive your full disability entitlements. Whether it's representing you at Work & Income or helping you connect with NGOs that provide helpful services (home assistance, transport to medical appointments, counselling services) - a field worker helps you get the services you need when you are too ill to seek them yourself.

 

[Hutan]

I've just moved to Christchurch this year. I can't find a good GP. Would love suggestions. Yes, a list of GPs endorsed by Ros would be very helpful.

The local ME support group has a paid community support person. I could not have been more disappointed.

She could not recommend any doctor. When I pushed her on it a little, she said someone had said there was a doctor named 'Jane' possibly at a particular medical clinic. I tracked down the doctor when I had an ear infection and she was good for that. When I mentioned that I and my son have ME her attitude changed (for the worse). She said that she didn't know about ME and was wondering why people were coming to see her about it. Her sole suggestion was that 'once you have settled in to the community a bit more you may find your symptoms are less important'.

I asked the community support person if she could help with any information about the Southern Health School that provides education services for sick children. She had never heard of it and had no idea about any resources at all to help my teenage son with his education.

This support person tried to contact me once after that initial conversation, leaving a message in which she talked at length about her personal problems (as she had in our initial conversation). I think her idea of support is to have a mutual sob session, which I'm not interested in. (edited - well not with her. Just realised my post may qualify as a sob session and I do feel better..)

The newsletters of the local ME support group have exhortations from the Chairman to be inspired to recover by his story of recovery 20 years ago. If only being inspired was all it took to recover...

Sorry for the rant. Just had to get it off my chest. When I was in Melbourne I read about the NZ field workers and had been so hopeful that there would be someone to help.