24. I'm not a gardener ...

Once I planted a seed. The seed was tended by me and a small group of seed-nurturing-experts and we helped it to grow into a flower that blossomed in a small but very precious garden. From that flower, others grew and they multiplied in the garden and gave a beautiful scent and a bright array of colours. When the flowers spread out of the garden I could no longer be the gardener. ME stopped me from even tending the original flower. The gardener who took over has great skill and has tended the flowers well as they have spread far afield.

I'm not a gardener. I used an allegory here to describe my work and how I have lost it to ME, because I don't want to identify myself. I am frightened I won't get my ill-health pension. I use a false name on Twitter. I don't put a name on my blog. I don't trust the internet; someone from the pension agency will see my writing or my tweeting and connect that it's me and say, well if she can write ...

I am writing this lying flat in my bed, it hurts my wrists and my hands, tires my brain. That I can write helps to stop frustration creeping in; that I can use FB and Twitter keeps me connected when my world has shrunk to the inside of my house with occasional must-do outings. My family, my loving and lovable hubbie and my funny girls keep me going; the youngest one's amazing baking, the middle one's incredible dinners and the oldest one's hilarious messages from student life. And the on-line humour that shines through the hardship of so many people with ME keeps me buoyant, when I can't believe I've had to leave my garden and I might never return to it.

23. The parable of the seed: A Thank You to the ME Experts at the IAMECFS, Fort Lauderdale, 2016

Thirty years ago the Chief Gardener of the Royal House planted a seed. He told his apprentices that it would grow and spread throughout the land. He said it would become a thing of beauty. And so it came to pass; it grew ... like Japanese knotweed it flourished, taking over gardens, clinging to each and every beautiful flower it touched, strangling and silencing their beauty, dulling their scent. The wilting flowers were noticed and people said it was a pity and even criticised the Chief Gardener. But he told The Queen and Royal Courtiers in her Government and Army, the Lords and Ladies of the land to trust him, that he was right. Indeed they greatly admired his work and The Queen knighted her Chief Gardener. His plant continued to creep, spreading as if indestructible to realms afar, not least to the parks and gardens of New York where it was received as if it were the greatest ship ever built, arriving safely at its destination, greeted by crowds who adored Sir Chief Gardener.

A new Spring is on the horizon in these gardens. In many lands from East to West citizens are asking where the beautiful flowers have gone. Commoners are noticing that millions of these flowers are missing from their gardens. Expert gardeners from every corner of the earth are dedicating themselves to finding ways to cut back the knotweed at its roots, to nurture the missing flowers and return them to their gardens, to release their colours and beautiful scents.

A big THANK YOU to these inspirational gardeners.

22. Radio Scotland's Kaye Adams - Fascinating and Frightening Truth about ME - is heard around the world

  

You tube of Kaye Adams show re: ME.

https://www.youtube.com/watch?v=isyCfHVdSn0

On Monday the eyes of the ME world were on Scotland. While Trump and Clinton near the end of their wonderfully (but worryingly) weird battle for the Whitehouse and world eyes are watching in wonder that Trump might win, ME patients worldwide are focusing on Scotland. The reason is, for the first time, a radio presenter has understood ME. Radio Scotland's Kaye Adams is finding out the true "fascinating and frightening***" truth about ME.  Too often radio coverage of ME has been dominated by researchers. First comes the UK's leading research which over thirty years is summed up in catchy media headlines: ME patients should exercise and think happy thoughts. When the researchers have finished, a picture lingers of ME patients as lazy, depressed people and researchers never fail to add that patients are ungrateful, abusive, vexatious and toxic. Evidence: a mum of a child with ME received a letter this week from the BBC that included:

:

It must, really must, be remembered that the FOI trial recently found no evidence of threats or harm to researchers from patients. These inaccuracies usually result in people with ME phoning into radio programmes sounding angry beyond words and leaving an impression that the topic of ME is indeed toxic, when in fact all they are doing is expressing an alternative opinion and give balance to the listener.

Kaye Adams, yesterday, devoted an hour of her programme on Radio Scotland to a discussion about ME. For balance she clearly had invited comment from researchers; Prof. Peter White, lead researcher in the PACE trial offered a statement about the accuracy of the NICE guidelines and I'm sure, hadphoned in would have been given adequate air time. 

Contributions from Julie Rehmeyer, an ME patient and patient-advocate from USA and Dr. Charles Shepherd, the medical advisor from the UK's ME Association gave a clear summary of the up-to-date biomedical research from around the world, an outline of why the PACE trial should not guide treatment and a statement from Dr Shepherd that the ME Association is requesting that the NICE guidelines be changed. Kaye Adams described an initiative a few years ago at Scottish government level that led to Scottish Good Practice Guidelines(SGPG) for ME and wondered why government interest in ME has flagged. It was noted that many Scottish doctors, rather than looking to the SGPG, continue to follow NICE guidelines that promote Graded Exercise Therapy (which very many patients say is harmful) and Cognitive Behaviour Therapy (which most patients say is not a curative treatment as claimed by researchers).

People phoned in. An articulate ex-personal trainer who is now partially bed-bound, and someone whose voice I recognised, not because I know him but I know that strained, weak ME voice, the one I often have and that contributed to my genteel sacking (see previous blogpost).

At the end of the hour Kaye Adam's voice too had changed. Her voice couldn't hide her shock and upset at what she had heard about ME patients in Scotland, the U.K. and even worldwide receiving no treatment, damaging treatment or seeking out their own treatment. That's millions of people, lives damaged, reduced to existing rather than living. 

I've written in previous blogposts that I'd like Scotland to join the world in doing biomedical research into ME, to distance itself from the discredited psychosocial research that is the focus in  the south of England. I've become aware of some sound biomedical research being done in Newcastle by Dr. Julia Newton and others in small pockets around the UK (but notably not Scotland).

What do you think Scotland can do? Researchers, ME practitioners, patients, representatives from the Scottish government should all have a say and I hope Kaye Adams will continue her much lauded interest and perhaps help to guide the way ahead for ME in Scotland.

***Kaye Adams own words in a tweet to Julie Rehmeyer.

Apologies. Way over my 500 words today but every word counted.