update.. met another with ME/CFS today from the society

I found out about another with ME/CFS in my country town from my ME/CFS society, so today I was feeling up to giving her a call to let her know I was here too and chatting to her on the phone.

It was very interesting hearing her talk exactly about the same issues I have around here eg no doctors in our town for those with ME/CFS so we are all treated bad in this town.. its taken her over 25 years to be diagnosed as the doctors here werent good (she ended up going to the city like myself to get a diagnoses). She was telling me how a local doctor here has screwed up her work cover case by the things he's wrote.

Like what happened to myself.. a doctor here sent her to the psychriastrists as he believed she had bipolar and they had to tell him she didnt (the doctor I still see now used to insist the issue was bipolar thou two psychs. who'd seen me said no).

She was telling me about a well known city ME/FM specialist who she has just started to see, telling her about our local towns reputation as far as FM and CFS patients go and that at least a couple of others have been in contact with complaints to one of the orgs. umm so I guess there must be a few others in this town that Im currently unaware of stuggling with the local doctors.

She's going to see a new doctor coming into this town (one I had been thinking about seeing myself) to see what she is going to like. So I will see how she goes before I now get serious about approaching the new doctor here.

She's alone like myself with no support here so we will be catching up hopefully some time soon to more so talk about the ME/CFS situation here.

I think she said something about having thought about protesting about the bad treatment in our town of FM and ME/CFS patients. I actually think that would be a great idea. If we did something like that it would make our local newspaper and we could get them to possible do an article on ME/CFS. Our doctors need a good kick up their butts.

I can see some possibilities happening of some ME publicy. (We also started discussing the possibility of starting up a local ME/CFS group). All I know is we really need to do something to change things for the ones with these illnesses in our local town.

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That is great news you have found someone else locally, and it sounds like there may be more. It would not take very many to have an impact with the local paper. Bonne chance et bon courage!
 
I was struck by your willingness to advocate locally...I know I have been busy thinking in terms of the "big" picture, when really I should be looking in my own town..our doctors in my small town have NO idea what CFS is..even my own GP..I truly think she believes CFS is not real...but she does do well with my heart and lung failure...all part of the CFS.

Last week I had pneumonia...and just for the heck of it I asked the treating doctor if he knew about CFS...he replied"no"'politely. Then looked at my chart and said..."well you see Dr KH, she must know"!

Thank you for the reminder for me to look into what I can do in mY town and with MY press and congressman.
 
I recently had a one-on-one conversation with my "new State Senator". I presented my med list of 29 "palliative" drugs with the breakdown of the overwhelming costs. I explained that all this medication only provides for 4-6 hours of functional activity in my life, and the rest is "rest". I then questioned how a State could have 3 Major Teaching Hospitals, yet, no doctor in the State will even mention the name of Myalgic Encephalomyelitis. Also, that primary care physicians don't even care to make an effort to learn about the illness from all the available research to make any effort to help. All they will do is throw a drug at a symptom as patients come to them without regard to find out what the core problem is. It is shameful that 3 teaching hospitals receive millions of $$$ in funding to ignore helping people who need medical compassion and focused treatments? It has been 8 weeks and so far no idea about what he has done with the concern. At least it was worth a try to present the info. Who knows what will come of the effort?

And Meg, after my stress test, I was told there was no concern that my left ventricular flow valve is only functioning at 75%. So much for preventative medicine? I guess there is no profit in treatment; though he did look pretty spiffy, and very "knowledgeable" in his neatly pressed white medical jacket. I knew he was a true physician, just struggling with respecting his MD Specialty and arrogance as he let me know I was not worthy of his talents! What a sorry and sad reality.
 
Molly what country are you in if you dont mind me asking?

Good on you for questioning why doctors dont know about ME. We do need to make it more known out there that our doctors arent being taught as well as they could be. We can blame the doctors but the issue is actually is higher up. Why arent they being taught about our illness as they are about other illnesses. Why in their medical book, they may only see one paragraph about our illness IF that, why arent they even given a lecture on it!!

As far as teaching hospitals go as one said to me before kicking me out in wheelchair to a car as I wasnt even able to walk from the hospital myself "this isnt the place for ones with chronic illness". So we dont have chance of those places teaching about ME.

thanks MEG for the post
 
You talked about setting up a local support group in your town - have you thought about contacting the people who already run country support groups in SA for ideas?
 
hi :)

?? ideas?? Im not sure what kind of ideas you think are needed?

We are not wanting to have anything like ME/CFS guest speakers or anything like that but just simply a social get together support group over just a hot drink. Nothing complex.
(Im well aware having had severe ME myself at how the environment needs to be for these get togethers eg No perfumes etc)

The issue lays in having enough to attend due to much of the time being out of action and the variablity of ME/CFS and being in a small town, the normal kind of ME/CFS issue. (the one I have been meeting with it usually takes several attempts before we are usually able to get together due to one of us or the other being sick)
 

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