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.

21. A Genteel Sacking

I never considered 33 years ago that I would end my career by being sacked nor that the sacking would be done so genteelly and with such kindness. The final meeting at HQ, with an HR manager who carried out what are very formal duties with empathy, ended with my manager and my sister who had accompanied me sniffling and trying to hold back tears. I haven't cried. Yet.

I loved my job. Every job has moments that are taxing but over 33 years I've had the privilege to work with very special, lovely people who have enhanced my life and whose lives I hope I have touched in a positive way. So, yes, I loved my job.

After decades of having my head deeply placed in sand about having 'Yuppie Flu' since the 80s, I couldn't ignore that ME was making my work and my family life a struggle. I don't include social life in this as I no longer have one. I do now feel that ME has defeated me. It's stolen my career from me.

I cannot fathom how a false illness belief could be to blame for ME. Mine is classic ME like that of hundreds of thousands of others in the UK and millions worldwide.  I have struggled for years to keep going, not avoiding activity but longing to be active when my body just wouldn't cooperate. I truly can't see that it's to do with believing I'm ill when I'm not. There's the more credible hypothesis that adrenaline and cortisol bounce up and down in response to anxiety and everyone has things to be anxious about. I can see that being more relevant when I was younger and am not aware in recent years of being so anxious that adrenaline is driving me. Having pulled my head out of the sand I've caught up with balanced discussion about ME and find the Rituximab research the most promising followed closely by Ampligen which I think by now should be more freely available to ME sufferers.

After years of unpredictable health that led to absences and more recently visits to Occupational Health I tried one last push to return to work and never made it back up to my full hours. All other options ruled out I recognised ill health retirement was the only way to go and for that you must first have Incapacity Dismissal. Hence my very gracious and somewhat inevitable sacking. I'm quite sure my boss has never had to fire anyone before so I'm sorry I had to put her through it.

Keeping it genteel I was reassured I could tell colleagues that I have taken early retirement rather than telling the truth. But oh how being sacked sounds so much more fun that that!

Self Reflection

Beauty is in the eye of the beholder. So we cannot deny Simon Wessely his perception that the PACE trial is a thing of beauty.  Capybaras are a thing of beauty ... to me.

His more recent assertion that it is an "excellent trial" can be questioned and indeed has been, notably not by any academics or researchers in Britain, but by many world wide.

Professor Winston agrees it is an excellent trial, pledging his ongoing belief in PACE and in his buddy Sir Wessely.

Both men, eminently respected within the medical profession, have had the ability to (re)classify ME as a psychiatric disorder while the World Health Organisation has it clearly classified as a neurological disorder. Do they have the authority to do that without going through the WHO classification procedures? It seems that celebrity and slaps on the back from the medical establishment allow them to do this. Leaving the WHO discredited.

All of us are called to be accountable for what we do in our work, including White and his PACE colleagues;  a huge part of our own accountability is self reflection. PACE researchers and supporters may succeed in justifying their harmful work and words to other researchers, academics and to patients but can they truly look inwardly and justify it to themselves.

There! I've come out of hibernation for long enough to say what I have to say.



Photo taken at a wonderful animal sanctuary in Kirkcudbright. Well worth a visit.

http://gallowaywildlife.org.uk

19. ... and signing back on again ...

Signing off was meant to be my final blogpost. Thought blogging was not for me. But it seems I have more to say ...

Rabbi Julia Neuberger did Thought for the Day on Chris Evans breakfast show this week. She mentioned that in the book of Kings in Old Testament it was written that lepers sat on the outskirts of a city and they talked together about the hardships of their illness and their lives. She stressed the importance of sharing and speaking together in support of each other especially during difficult times.

People with ME do just this type of sharing on FB, Twitter and on ME Charity websites. The Internet makes it easier to find people sharing the same interests, hardships or sometimes even the same sense of humour.

How strange it is then to find the PACE trial authors suggesting that there is something sinister in ME sufferers sharing feelings, info and humour on various means of social media; we are it seems trying to sabotage their trial through our improper discussion. No, no, no ... our discussions are the modern day equivalent of my grandmother, who was born in the fading years of Queen Victoria's reign, standing on the street corner discussing the sinking of the Titanic or the lepers of the Old Testament sharing their woes outside the city walls.

I've never known a patient group so criticised, so judged as ME sufferers - tho' I'm sure the lepers of Old Testament days and more recently were criticised, judged and shunned. Our motive we are told is to cause upset to poor researchers who have done us the great favour of researching our ailment. They don't need to do it for us you know! 

I can speak for myself - and I'm sure others will join me - in saying that our motives are to get support from others who feel the same as we do - outcasts from mainstream medicine. We sit like lepers on the outskirts of society. UK researchers and newspaper reporters, even educated health correspondents are gleeful in praising books such as Suzanne O'Sullivan's All In the Head, the likes of which which influence people's views on our illness and move us further away from the city gates than the lepers were in Old Testament times. 

A hand shake and genuine interest from now-Scottish MP, Daniel Johnson and Ian Murray, Scotland's only Labour MP in Westminster helped me feel more part of Edinburgh's bustling Bruntsfield life on the morning of the election, when I spoke to them about how ME is devastating lives and about the ME awareness drop-in at Westminster on the 11 May.

18. Signing Off

Left my last post on a bit of a 'cliffhanger' as someone on Twitter called it and for longer than I meant to. 

Life will continue at times on still waters, at times on rocky waves that take me towards the whirlpool. ME adds many more waves but I need to become a better sailor. I'm recognising CBT is showing me the skills to become a better sailor and equipping me with nautical tools that are less chipped and battered. As I previously said, I was ignorant about the range of severity of ME and that some people are bedridden with it and I do count my blessings that I can try to sharpen my sailing skills and fix the damage to the tools, while I recognise many can't.

I've lived thirty years with ME and intend, God-willing, to live another thirty years or more. I'll continue in awe at the power that Simon Wessely and his like-minded colleagues hold over ME but am heartened that the philosophy has not permeated to all ME practitioners and I hope will start to have less influence on people getting benefits, pensions and disabled badges - helped largely by ME services, Charities and Associations providing support and information to weak people trying to ... not beat the system ... but merely get what is needed and deserved.

I'll continue to watch the research with Rituximab and other similar drugs with heartfelt hope. But I've done my up-to-date reading on ME; if you can get beyond the negativity and despair that inevitably comes from people suffering an illness as misunderstood as ME and who are disabled as much by other peoples' opinions of them and their illness, there is positivity and hope that things are getting better and even that one day there might be a diagnosis and a cure. I'm going to hang on to this; it's my life-jacket as I set out.

So, I'm pointing my canoe in the right direction and signing off.