THIS IS ALL ABOUT ME

Actually, this post is not about ME (as in “me, myself and I”) — it’s about ME, as in Myalgic Encephalomyelitis.

Why this post, and why today? The reason is simple: August 8 is SEVERE ME AWARENESS DAY; my adult youngest daughter has severe ME, and she has asked that I use the occasion to call attention to the subject for her. Purpose? To spread knowledge of this affliction, because most people aren’t familiar with ME.

That’s not a pun — it’s a debilitating and (thus far) incurable disease which has left her unable to support herself or live unassisted for over 20 years. As if that’s not ill-fated enough….well, I’ll let these links do the explaining:

http://www.25megroup.org/campaigning_Severe_ME_Day.html

http://documentingme.net/2014/01/31/me-vs-cfs-theyre-not-the-same/

They say it’s the thought that counts. If so, think of someone you love, with this disease. Then think of your loved one’s condition not being taken seriously by the medical establishment because “it’s all in your head” — as if any normal human being would choose to see his or her life’s desires and talents laid waste, in order to get out of working for a living and having a full, rewarding life.

What are they thinking?

 

 

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4 comments on “THIS IS ALL ABOUT ME

  1. mistermuse, I was profoundly affected by your ME post. I did read all the information that I could about this horrible disease. I was once involved, as you may recall, with Cancer Research as part of a grant while I attended Wayne State University in Detroit, Michigan.. I am now informed about the difference between ME and CFS. I do think some who called themselves “doctors” should not be practicing medicine. I had a liver condition that was misdiagnosed as melanoma, a type of cancer. I saw another doctor and was told I needed a hip puncture test if my platelets dropped too low.I said NO! Found out she was milking Medicare and other insurance companies by running extra tests on her patients. I complained about both of these quacks. One was not paid a thousand dollars for my last appointment.and the other was asked to quietly resign. Can I help in some way to make this tragic disease get more research done as soon as possible?. Research takes years and the sooner we begin, perhaps we can find a cure or at least a way to deal with ME.

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    • rielyn says:

      Hi Michaeline, I’m mistermuse’s daughter, thank you for reading and thanks Dad for such a great post! I’m so sorry for what you went through with your medical mistreatment and hope things are better for you now. And yes, sadly there are corrupt doctors and administrators who bilk Medicare/Medicaid and there are those who would sweep illnesses under the rug to avoid the high costs of research and paying out disability benefits, but I believe those are the few and that these problems come from the top down. Most doctors are not corrupt but working with bad information and the best thing people can do to help is to get the correct information out to as many people as possible. Renaming ME to CFS in the 80s was done to trivialize the illness so no one would be concerned about the lack of research and patient support.

      There are a few doctors who specialize in ME – although even they often still refer to it as CFS as that was the only name used in this country for so many years. Over two dozen of them, using data from 50,000 patients, created new criteria to define and diagnose ME. The International Consensus Criteria were published in the Journal of Internal Medicine in 2011 (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full), however instead of adopting these criteria the US dept. of Health and Human Services is now appointing a committee to create its own. The only other time this has been done was with the Gulf War Illness, and it didn’t go well.

      Good research can’t be done without accurate criteria to correctly identify and study people who actually have the illness being studied. The biggest problem we have right now is that the conflation of ME and CFS – two separate categories with separate criteria and definitions – has caused much confusion with research being done on mixed patient groups.

      Another thing to help right now would be to support the effort to stop this new HHS committee redefinition and adopt criteria agreed upon by an international group of ME specialists. There is a petition that can be signed here. https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/

      Thank you so much for your interest and your help!

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      • I signed the petition although I have not been officially diagnosed as having ME. However, I think some doctors may have considered that I could have CFS. I know most doctors are trying to do the best they can with the enormous amount of material they need to study in order to keep up with the latest research, However, I agree with you, dear daughter of the muse, that the two conditions should be separated while doing research on each medical problem.
        Thank you for your response to my reply. There is so much we can learn by having an open mind. I hope your condition does not keep you from fighting for this cause. I am keeping you in my prayers, if you don’t mind. I am fine by the way and I appreciate your concern.
        Sincerely,
        Michaeline Montezinos

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  2. rielyn says:

    Thanks Michaeline. I’m glad you’re ok and I appreciate your comments and your prayers. 🙂

    Like

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