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Wednesday, 23 August 2017

Inconsistency

Hello,

Sometimes, reading other people's accounts of their M.E experience is like reading a foreign language. In the 10 years since my diagnosis, I have only ever received a CBT referral. Despite having a wide range of symptoms, for which there are specialists, I have never been referred. So
when other M.E sufferers talk about appointments with neurologists, endocrinologists, gastro-people, physiotherapists, etc etc.... I find myself wondering why their experience is so different to mine. My orthostatic intolerance has never been addressed by GPs, nor my light sensitivity, IBS or hearing issues. It's all just lumped together under the label of untreatable M.E.

Sometimes, these other sufferers live in other countries and so that explains why their healthcare differs. However, I am increasingly finding that UK sufferers are treated differently depending on their postcode or whether they are treated by the NHS or privately. Some take part in medical trials or drug trials, others don't get the opportunity. I can fully understand why this breeds resentment within the M.E community.

It's all a bit of a mess really isn't it? Not only is there no treatment for M.E but there isn't even consistency when trying to deal with individual symptoms of the condition.

There are three things that we are now striving for....treatment, awareness, and consistency!

Love,

Sally (and Foggy OBVIOUSLY)

1 comment:

  1. You make excellent points Sally. I too have read the accounts of others and have felt everything from horror to envy. We do need consistency. Unfortunately, just like chronic pain and other chronic conditions, unless they become standard curriculum with clear guidelines - including when referrals are required - it's going to be a game of chance. BUT, thanks to some very successful campaigns by folks such as you and Foggy, the Millions Missing, and now Unrest, ME is having lots of light shone on it! A new day is dawning. Let's pray it comes soon.
    Hugs,
    Kristina ❤️

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