ME Awareness month round-up

I know, ME Awareness week was a couple of weeks ago and work took too much out of me back then. However, the month ends in just under two hours (British time) and I did want to post some links to some worthwhile stories about ME before it ends.

Before I go on, Panorama just broadcast an hour-long exposé about terrible abuse at a privately-run hospital (contracted by the state) for mentally disabled and autistic adults in Bristol (England). I intend to write more about this tomorrow, in sha Allah. None of these were ME patients, but ME patients have in the past been taken from their homes against their will (Sophia Mirza and many others), put on locked wards (Lynn Gilderdale, Georgie Shelton and many others) and subjected to abusive treatment by staff and left to the mercy of other (disturbed or otherwise disorderly) patients. There have been recent reports about doctors and social workers threatening to take children into “care” unless their parents co-operate with demands to subject their children to damaging graded exercise treatments. This investigation has led to several suspensions and a police investigation, but how many other places like this still exist? (You can watch it, on iPlayer, here if you’re in the UK, but it makes very disturbing viewing as it contains secret footage of patients being abused.)

First off, I must mention the blog Dreams at Stake by Laurel, whose testimony to the CFS Advisory Committee is already on YouTube, and who recently made another video to raise awareness (you can find both here). Laurel has been bedridden for twelve years. Her blogroll includes most of the ME or CFS-related blogs out there (not this one, as most of it isn’t about ME).

One of her friends is Alexis from Minneapolis, whose blog is titled The Corner Room. She has been house-bound for some time, but recently suffered the onset of extreme light and then sound sensitivity, so she and her partner are having to resort to finger-spelling to communicate. It’s unusual for someone to be this sensitive to light and sound, and not be totally bedridden. Her father blogs at CFS Patient Advocate.

Another blog that’s worth reading is Claire Wade’s. Claire runs Holidays from Home which are packages offering a travel experience to people who cannot actually travel, which were featured on Radio 4 recently, but her personal blog follows a post-a-day format and often gives personal insights into living with a chronic illness.

ME Free for All ran an ME Awareness feature called “a sentence of ME”, inviting people to sum up ME in one sentence (although a lot of contributors didn’t stick to that). The results are here and here.

Just to show that ME awareness isn’t just for May, let alone 12th May, this year a whole lot of ME-related news arose in April. This was not only down to the publication of Kay Gilderdale’s book (reviewed by me here), but also because of developments in setting up an ME research centre in Norwich. That article also contains an interview with another severely affected sufferer, Kerry Newnham.

Another very severely affected sufferer in the UK, Jenny Rowbory, published a moving piece about the urgent need for research and the consequences of poor care for various sufferers, including herself. She has also published a book of her poems. Also on the subject of the need for research, Emily Collingridge published her appeal last Friday. (Someone on Mumsnet had the bright idea of posting it to their forum, drawing attention to it with a headline about showing her boobs in Asda, but it soon got deleted.)

From various local newspapers: Antoinette Christie about her son David, Theda Myint from Western Australia has been reunited with her father and is going to India for Ayurvedic treatments after everything in Australia failed; Rachel Lindan from Wales has a milder case but still relies on her mother to care for her, and Kay Gilderdale gave two interviews ([1], [2]) to different regional UK newspapers.

(And of course, Invest in ME had their annual conference, attended by Hilary Johnson, Dr David Bell, Dr Judy Mikovits, Dr John Chia and Prof Malcolm Hooper among others. Various reports are expected to be issued — there is one here — and their video will likely be released in about a month’s time. Dr Mikovits went on to give this well-received presentation in Belfast.)

Update: Ros Vallings has written this report on the conference, available from the IiME website.

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