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Visit your doctor en masse day for M.E.??

Messages
28
Just thinking out loud here so haven't worked out the details...

What if we were to pick a date, and send out publicity in advance, when all M.E. patients were to visit their doctor. The idea being it would be like a one day strike, the purpose being to show the power in our numbers, embolden patients, and to hopefully garner some publicity.

Don't get me started on the medical research system...but I think the basic problem is that we don't cost enough money for government or health insurance companies to really wake up. Although the lost productivity is staggering, the fact that in government that budget issue would be dealt with by a different department, welfare & work, then whoever is in charge of health care costs, means the penny doesn't seem to fully drop for them.

I saw some insurer talking about M.E. He was saying that when patients get newly diagnosed, there's a flurry of doctors' visits that they have to part cover, but then, radio silence. Patients may go on to visit docs privately out of their own pocket, but all in all, from a health insurance perspective, we don't cost that much. Employment insurance obviously is a different matter...

By contrast, the cost of leaving other diseases untreated is very high. Don't want to spend the money researching arthritis drugs? Fine, be prepared to shell out millions on hip replacement operations down the line. No diabetes drugs? Amputations, eye sight restoration ops etc. M.E.? Totally debilitating but very "clean".

Other diseases are facing funding cuts as well but M.E. just by chance of circumstance, is particularly easy to sweep under the rug.

That's why I think an en masse doctor visit could work well, just a signal that hey, we're here and we can cost you money.

There's some obvious problems...the fact that only 15% have been formally diagnosed (though I think the number who know on a practical level that they have M.E. is something more like 50%) means it might fall flat numbers wise. I think it also would be much easier in a country like the UK where doctor visits are free rather than asking financially stressed patients elsewhere to fork out for a visit.

If it worked we could do it periodically. As for doc visit? Just tell them you're here to pursue further treatment options.

Just a bright idea I woke up with today. :) Have your say.
 
Last edited:

beaker

ME/cfs 1986
Messages
773
Location
USA
My rheum, who is my main ME/CFS doc is booked many many months in advance. Follow ups have to be squeezed in. They are understaffed and overwhelmed. My PCP is no as booked, but his availability is low. There is a shortage of docs here. I could not would not do that to make a statement. I am lucky to have the docs I have and do not wish to abuse their time.

I will say that the fact you are thinking of ways to raise awareness is good.:)
I just don't think this is a good one.