I have no voice

As I’ve mentioned in recent posts, when I first contracted M.E. I was determined to raise the profile of my illness.  Back in the early 1990s nothing was known about the disease, it wasn’t in the public or the medical professional’s field of consciousness, and only a handful of people world-wide were fighting for M.E. patients.  I took part in every study going.  I wrote articles in the press.  I wrote to any ill-informed doctor I ever saw, educating them on my disease.  I attended conferences even though the effort nearly killed me.  But it was all for nothing.  No-one was listening.

The cost of activism, in terms of symptoms and energy expenditure, was too much for me and I realized I had to focus on my health instead which I did for many years.  However due to the super-human efforts of exceptional patients like Jen Brea M.E. has lately received international attention, so I thought I’d have another go at getting my voice heard.

There are some exciting research projects going on in the M.E. world and I’ve written to the researchers, eg. Ian Lipkin, Ron Davis, offering my 22 years worth of M.E. riddled body for study. They haven’t afforded me the courtesy of even replying, let alone taking me up on my offer.  I was told by the ME Association that, due to the fact I took part in the world’s only longitudonal study of severe M.E. patients (the CHROME database), that my bodily fluids would be amongst the first to be collected and stored at the UK’s ME bio-databank, which has turned out not to be the case.  They are only collecting samples from severe M.E. patients in the London area to cut down on travelling costs even though I’m willing pay for sample collection here in the north and Fed-ex it to them down the M6.

Severely affected patients are excluded from almost every study ever conducted on M.E.  How shocking is that?  Would you study Cancer and only include people who have a small skin melanoma and not people with Leukaemia?  Would you study heart disease and only include people with angina, not those with congestive heart failure?  Would you study allergies and only include people with mild hay fever and exclude anyone who has life threatening anaphylaxis?  Of course not, because you’d have a very skewed picture and the treatments to cure a small skin melanoma would not be the same as the treatments needed to cure Leukaemia even though they are both cancers.

If you studied cancer, would you exclude anyone who had recovered?  Surely you’d want to find out why they’d recovered.  It’s very rare for someone as ill as me for as long as I have been to make any kind of recovery from severe M.E. yet here I am, OK not ‘better’ but a million times better than I used to be.  Yet no-one is interested in finding out why!  It makes me want to scream.

The only M.E. patients well enough to travel to hospitals for research studies are the mild to moderately affected.  The severely affected are in their beds too sick to crawl to the loo.  So, hey, let’s just ignore them – what can they tell us about the disease anyway right?!!  The longer you have severe M.E. the more health problems you seem to accumulate, yet long-term severe patients are the most ignored of all.  Going back to cancer as an example, would you only study people who had cancer for 6 months or people who had lived with the disease for 10 years and managed to survive?

The world may not want to listen to a sick old timer like me, but thankfully they are listening to Jen Brea who this week made the first TED talk on M.E.  I hope all her effort isn’t in vain.  I hope M.E. researchers finally wake up to the fact that the answer to this disease lies in the severely affected patient’s hands, particularly those who have been sick for many years, and makes an effort to reach out to us.

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2 thoughts on “I have no voice

  1. Rebecca

    I’m not sure how it is in the UK but I can tell you in America we have “big pharma” who creates the obstacles for proper research and treatment. They do not want answers, especially those that are learning how to improve and live with their illness, they would prefer to keep us sick and pay enormous premiums for doctor visits, scans, prescriptions, etc. In America, all of us are getting sicker with various diseases and it’s getting more expensive to seek treatment.
    I’m sorry that no one is listening to you. I’ve been met with the same resistance as well after living with my various autoimmune dysfunctions for 20 years. I have told countless doctors that I want to help in any way that I can because I wouldn’t wish my poor quality of life on my worst enemy and I’d love to help other avoid what I’ve been through.

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    1. Jak Post author

      Thanks for the comment Rebecca. I think corruption within drug companies is fairly universal sadly. The thing I don’t get, however, is that M.E. will probably be treatable by drugs, which you may have to stay on for life, so to me it seems in the interest of the drug companies to research the disease and develop some! If there are 17 million people worldwide with ME that’s a lot of cash. Jak x

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