29. Wham - a rewrite of a previous post

In my very first blogpost (Pancakes) I mentioned that pre-ME I loved canoeing and even took part in a canoe-polo league. The ladies league combined with the youth league which unfortunately resulted in slightly built ladies like me facing teenage boys built like hulks ...

The only rule I remember of canoe-polo is ... when you are holding the ball, someone in the other team can push you into the water. The more skilled player can make a nifty twist of the oars and flip the canoe upright again without dropping the ball. I did try, and a very patient teacher allowed me to try repeatedly, but I never mastered it. So, I tended to skulk in defence and avoid holding the ball as much as I could because every time I took possession of the ball, a hulk from the opposing team would appear and push me in, before going on to score a goal.

You might ask, 'Why did I do it?' I have to say quickly that my river canoeing was more adept than my polo skills and I canoed for a couple of years before capsizing into a river. I'm sure, because I'm not a strong swimmer, it was sheer will-power rather than any particular skill that kept me in the canoe. The rapids at Grandtully were a favourite and challenging end to a day on the Tay. I took part in the polo because the team needed a fifth player and was often one down; they assured me that the team was better off with me as the fifth member than playing with only four, tho' I was never convinced.

My experience of ME is like catching the ball in canoe polo; here comes the ball ... you catch it ... and for a moment you think, Hey, here I go... full steam ahead ... target in sight ... I'm on a roll ... then ... wham ... one push... and down into the water you go. The Wham is ME and like ME it's unpredictable.

Unpredictable is the word that a rather scary Occupational Health doctor used to describe me when I ventured to ask if I had any rights as a disab...... 'Rights! Your employer has the right not to have someone as unpredictable as you working for them!'

The all-elusive flip is my belief that a cure will be found; a cure that will stop ME from knocking me down at every turn. I can't stop believing that the scientists worldwide working towards a biomedical cure will be successful ... and maybe one day I can get back into a canoe.

28. My poem for ME Awareness Day

***Press here to view ...
ME Awareness Day poem on You Tube

ME since I was 24

Me since I was 24

When I was 24 ME was 'yuppie flu'

Belittled and mocked by the press

That's the reason no-one knew

and 'til i was 54 I couldn't confess

That I've had ME for thirty years

And only the risk of being fired

Led me to face my fears 

And admit - out loud - I was more than 'tired'

Avoiding diagnosis for many years because

Who?

Who would want the label Yuppie Flu?

To be given by doctors who've been taught

 "its all in their heads, they think they're ill; they're not"

At 24 Epstein Barr Virus known as glandular fever

Left me weak and sore for months, for years

Recurrent infections of chest and throat and ears

And pain in joints and muscles

So extreme 

at times it made me scream

A weak and sorry sound 

As i crawled along the ground

To bathe and feed myself

Longing for my health 

to return, my work and my social life to resume.

Seen by doctors who were taught 

"It's all in their heads, they think they're ill; they're not"

Then there's the comedians who think ME's fair game

Because compared to cancer 

"It's really not the same" ... So ..

...let's all laugh at Sue who has ME - It's really quite a joke

that 'fired' rhymes with 'tired' so we'll take an easy poke

At Sue who's kids are growing up with mum who's been 'retired'

A part-time mum, in bed a lot because she's merely tired

....so let's see if we can raise a laugh at Sue who has ME

It's really quite hilarious that people cannot see

The millions missing from society, from schools and from work places

Because ME is stealing life from them and hiding all their faces.

ME really isn't comedy

The missing millions worldwide are more than ready

To use what health and energy we can 

 to ask the governments to plan

research funds, for a medical breakthrough

That will cure this devastating disease and to ask you ...

Until a cure's found for ME

Please show us you can see

The millions missing from society, from schools and from work places

Because ME is stealing life from them and hiding all their faces.

 

27. Difficult to Swallow

A health question to The ME Association's most recent ME Essentials magazine caught my interest for two reasons; the first, the question was about swallowing difficulties, which I have experienced myself and secondly because I am a speech and language therapist (SLT) with a post grad training in Dysphagia (swallowing difficulties).

Swallowing difficulties are terrifying. Everyone chokes from time to time on notorious foods such as grapes, dry crumbly scones, rice crispies so most people will remember how alarming it is to  try to cough a bit of food out of the back of your throat in order to regain the ability to breath. And how embarrassing it is if you take a bite of scone or cake in a busy cafe and end up gasping, coughing, spluttering not actually sure if your breath is going to return.  You feel that you're trying not to choke to death while equally fearing soul-destroying embarrassment, and in some ways when composure returns, the fact you have your dignity intact means more to you than your breath returning!

I've made my own assessment of my swallowing difficulties and try to avoid offending items of food: taking a bite of a dry scone then breathing in ready to speak or laugh is a danger zone; eating food that has two different textures, especially salad with a liquid salad dressing often results in me chewing the salad items while unnoticed the acidic salad dressing slips down to the back of my throat; I can sometimes feel icy cold drinks at the back of my mouth going up into my nose and down towards my lungs instead of my stomach.

In addition to choking episodes, I had over a year of non food related coughing that occasionally took my breath away and left me unable to breath in. A diagnosis of Asthma and a prescription of inhalers helped this instantly but even with the inhalers it is creeping back again and will be reviewed.

In my work as a SLT I often assessed clients who choked on food or drinks and advised about types of food that were best to eat and which to avoid. If assessment face-to-face was difficult and it wasn't completely clear what was physically happening inside someone's mouth and throat I could make a referral to the local hospital for a Video Fluoroscopy (VF) appointment which involved having a video xray taken while the client was swallowing food and drink with what nowadays is done using the most modern computerised technology.

Having your swallow assessed is a wise thing to do if you have choked repeatedly on food or drink, especially as the lady who wrote the the ME Assoc said that she'd needed the Heimlich Manoeuvre three times. There is the risk of choking but also the irritation to the lungs of food or liquid finding their way in.

I've written to the ME Association saying that the lady who wrote the question for ME Essentials should ask her GP for a referral to SLT.

I will return to this topic again.




I'd be interested to hear other ME sufferers' experiences of choking either in a comment below or a tweet on Twitter and I will follow up by discussing ME and Dysphagia with SLT colleagues in the VF dept.

26. Taking a poke at ME ... ... and if you don't agree with what's written, take a poke at me!

Now if Steve Carell had sung, Please Don't Make Fun of the Disableds as Michael Scott in the context of an episode of The Office (USA), I have to admit I might have found it funny. I might even be touched ... not sure what word might describe my feelings... amused ... yes, mildly amused that my dis-abling illness was poked at in a way that clearly was being sung by a clueless comedy character, a caricature of someone with questionable social graces and a lack of understanding of acceptable social boundaries. His use of the term 'Disableds' would then have been better placed ... within the strict confines of The Office, from the voice of a character who tries to say the PC thing but always gets it wrong. The audience would laugh at him for being inept in his use of words.

Its all in the context. I don't see Ricky Gervais as David Brent (who became Micael Scott in the American version.) He's not built up the character enough for me as Steve Carell has done in the context of the long running - very long running - USA sitcom (one of my teenagers has the box set!) Ricky Gervais is still Ricky Gervais when he's singing so it comes across perhaps as more clever-clever-cruel than I think he intends. And even more so when the song is available commercially in a collection of similar songs, so that people might ... sing along at a party?

I do see what he was intending, choosing the predictably unacceptable things to say about people with disabling conditions and letting David Brent say them grotesquely outloud cos that what his character does. Trouble is, most people do get that it's unacceptable to make fun of those who are disabled by a health condition or illness. I hope so anyway. But people don't get what's wrong with saying to ME sufferers,  'Oh you have ME. Well, I'm tired too. Everyone's tired'. People with ME hear it all the time. Not maybe as directly as that but people do tell me very very very often how tired they are ... non verbally, by actions, facial expression, text and email, verbally, face to face, behind my back but within earshot. That and many other pokes chip away at ME's credibility as a real illness. 

It's easier to have a poke at the illness than to take time to find out that it's a very serious, life destroying illness that most in society don't understand unless they're touched by it. Mention MS, Dementia, Cancer and people get the life changing enormity of these - and don't, I think, write 'funny' songs about them.  ME isn't like other illnesses that dis-able; it's a stigmatised illness that people think they can take a poke at. I'm afraid the Disableds Song gives the message that it's okay to tell people with ME that they're merely tired. It's what people already say. 

In context it's David Brent's awkward, clumsy verbal and social ineptitude; out of context it is Ricky Gervais being cruel which I don't believe he is. I read the lyrics of the song and referred to him in a tweet as the Katie Hopkins of comedy. I don't think he is. It's all in the context. Sorry, Ricky, if I've got this wrong and if cruel is what you were trying for!

25. A reply to Ricky Gervias' Disableds Song

Very loosely to the tune of Mine Eyes Have Seen the Glory ... very loosely! or better still ... don't sing!

CHORUS:

  Hello my name is Ricky 

  And I'm really quite a wit

  Rhyming's very easy

  And there's no reason to quit 

  When I'm well ahead in song-writing

  The words all seem to fit

  So really very well

  That I don't see I'm writing sh..!

'Fired' rhymes with 'tired'

So let's see! There's that ME

Where folk are a tad weary

That is really just like me

So I'll disregard it kills people and devastates lives too

And carry on with rhyming 

Because that's just what I do

  Hello my name is Ricky ...

Let's have a look and use a name and see if it's still fun

'Please don't make fun of the disableds' of which Sue is one

She sometimes cannot walk or talk, and so she's just been fired

After thiry years, a job she loved, but heyho why get wired?...

...let's all laugh at Sue, she has ME It's quite a joke

That 'fired' rhymes with 'tired' so we'll take an easy poke

At Sue who's kids are growing up with mum who's just been fired

A part-time mum, in bed a lot because she's merely tired

  Hello my name is Ricky ...

Here's a photo of the lady; let's laugh at Sue who has ME

It's really quite hilarious that people cannot see

The people missing from society, from schools and from work places

Because ME is stealing life from them and hiding all their faces.

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.

17. Cognitive Behaviour Therapy and a Boat called Positivity

Right! I said I'd write about my Cognitive Behaviour Therapy (CBT) session in Blog 15. I didn't reach it in that one ... a fairytale filled my 500 words ... but CBT is one of the two key ME treatments, loved by psychologists, rated as a cure for ME by rosy-spectacled researchers, taken from NICE's guidelines as a healing treatment by many GPs - so hey I really must pay it some heed.

Hm. Are there crowds of overjoyed people in the UK, USA, Denmark, Germany and 
The Netherlands standing on the ... roof, tag, dach, dak ... of their ... house, hus, haus, huis ... shouting that their ME has been cured by CBT?  

No! Engin! Nein! Nee!  

It's recognised that CBT can help you live with a chronic health condition or cancer but that's not what is being said by researchers and journalists; they are proclaiming that it improves the symptoms of ME.

The reason for the different languages is that CBT and GET are established as key treatments for ME in all these countries 'under the influence' (hic) of the PACE trial. Its results are highly influential and wide reaching. Trend setting. They provide the evidence-base world-wide for ME treatments. Such influence! Such responsibility for the researchers! 

I felt it right that I was referred for CBT to support me to live with ME and to return to work with it after several months sick leave. I was not sold it as a cure. So I went along with some faith in it as a supportive treatment.

I blurbed about myself for a while and went away with an image of a boat filling up with water and me trying to empty it using a perforated spoon. Yes, I recognise that this is what life is like; so busy in the here-and-now trying not to go under that you can't look ahead and see clearly what changes now could reap benefits in the future. 

So, encouraged to look ahead rather than focus on now, I have a picture of the boat making a 1 degree angle as it cuts through the water, the angle becoming wider as the bemused sailor -me- looks ahead. So, a 1 degree change can make a big difference in the longer run. The 1 degree difference can be like sitting quietly relaxing at lunchtime rather than joining colleagues in the noisy canteen. I'll give it a go. 

I'll put out of my mind that it's merely a picture of a boat with a drowning sailor and, too, the question of how such an image can take on life-like proportions and equate to life; a boat can cut through the water at that angle but who's to say that the path of life goes at an angle and not in a straight line or as I've found in the past an ever decreasing circle? Such negativity ... taking the helm of a boat called Positivity and leading it into a whirlpool! My psychologist will be thinking I have a false illness belief and that I want to stay ill!

One Small Step

I wrote an email to her expressing my dismay at the lack of any clinical trials involving ME patients in Scotland:

I've had ME for thirty years and have managed to hold on to my job in ... all this time. In the last couple of years my health has worsened. I'm starting back on a phased return next week after six months off sick and am looking at probably having to reduce my hours, pay and family income (3 teenagers and a hubbie happily in remission from .... cancer) in the hope of avoiding having to apply for ill health retirement. I am maddened at the lack of support for biomedical research in the UK. I'm wishing I lived in Norway where a drug for lymphoma (Rituximab) has been showing huge recovery figures for people with ME in research trials. I'd love to see some Scottish government funding or some charitable funding for a Scottish Rituximab trial that perhaps could link in with the Norwegian study.

I'd love to find a haematologist who would be as fascinated as I am about the fact the drug that treats B-cell lymphoma has had such success with ME in Norway with ME patients. Especially, as .. (a close relative) ... has been diagnosed with B-cell lymphoma and my father had B-cell leukaemia. I would just like a chance at a drug that might (and I know it is might) help to turn things around for me before my job and income collapse completely.

I have been pleased to receive a reply saying she has written to the local NHS Trust. Part of her letter:

I sent my best wishes to her and to her brother who I had noted was in the same year as me at our local High School. I'm not sure he'll remember me because at High School I was a mouse. But although my confidence didn't flourish at school it has in the years since then. I'm still not loud, overtly opinionated and certainly not a militant ME activist as some ME sufferers or advocates are said to be ... usually by professionals who should know better!  

All types of people from all types of backgrounds have ME though sometimes professionals try to typecast a particular personality type or emotional makeup, as if it is relevant to the diagnosis. My approach is not to moan loudly like a school child's first attempts at the bagpipes and not to stand on a soapbox proclaiming my discontent, but to do what I can in my own quiet but determined way. Every small step counts in what ever way suits your personality, in your own locality, with whatever level of energy you have. I believe that small steps made in small places will add up to big steps all around the world.

15. A Collective Raspberry at Functional Fairy Tale Disorder

I started a short course of Cognitive Behaviour Therapy (CBT) last week. 

A review appointment with a Neurologist last year resulted in his suggestion that a course of CBT through the local MECFS service would help me return to work, after several months sick leave. I told him that I'd be more than ready to admit I had mental health problems ... if I did! He said I'd got him wrong, that he was suggesting CBT to support me to cope with returning to work with a chronic health condition. 

He's a Neurologist who writes and presents widely about Functional Disorders and is clearly careful not to draw his patients' attention to the fact that the term Functional Disorder seems largely to imply an all-in-the-head diagnosis. He encourages that patients are told 'your illness is very real', 'I believe what you are saying' and you are experiencing symptoms that are 'very real to you' ... but ... whatever is said ... many doctors still believe Functional Disorders have no clinically provable symptoms and therefore are all in the head.

The name Functional Disorder is descriptive of the malfunction of multifarious body parts in the absence of any neurological signs shown by neurological testing. I can't say whether my Neurologist counts MECFS separately or if the chronic condition I am returning to work with is, in his mind, a Functional Disorder. 

He writes a piece for other doctors, that is accessible on-line by patients, and in it says that you can 'trick' your patient to say, 'Yes' when they feel you touch them and 'No' when they don't and they may say 'No' in the area they believe is affected ... but be careful ... some darned annoying patients (my words) may suss out what you've done. What a jolly jape; we can catch our patients out and prove they are imagining or exaggerating non existent symptoms, by tricking them.

He writes:
'The more physical symptoms a patient presents with the more likely it is that the primary presenting symptom will not be explained by disease. A long list of symptoms should therefore be a “red flag” that the main symptom is functional.'

MECFS has a long symptom list. Luckily now biomedical research is leading to promising results with Ampligen and Rituximab that point to MECFS being a disorder or even perhaps a disease, a real, bona fide disease of the immune system with associated physical symptoms, even a looooooong list of associated systems. The Norwegian scientists researching Rituximab as a possible cure suggest that MECFS patients may have too many B cells in the lymphatic system ... the B cells fight against infections ... if there are too many B cells, the extra ones attack the body - many different parts of the body - when there is no further infection to fight. That would surely involve a long list of symptoms in various body parts. If it can be proved, then everyone with MECFS can join together in producing a LARGE LOUD raspberry to Neurologists who have humoured our so called Functional fairytale Disorder for so long.

Oops, this started as a piece about CBT but my 500 words are over and I haven't even started on it. Next time!

14. Angry Voices

Thirty years with ME and before now I've never joined any forums, local groups or heard any views one way or the other about any aspect of the illness. I've kept my head down and carried on - I was going to say through the ups and downs of the illness but reality is the downs and the deeper downs - until it wasn't possible to sustain it eight months ago. Since then my reading and viewing on the subject could amount to a degree. That could be an impressive string of letters after my name! MSc MECFS SEID PVFS. I admit I was ignorant before of the range of severity of symptoms and am utterly sad to the core to know now that some people have been bedridden for way too long and that there have been injustices where psychological treatments have been enforced with devastating results and that people are being denied care and benefits that would not add luxury to their lives but just supply their daily essentials. Is it any wonder that angry voices can be heard from the written words of Tweets and FB comments?

I hugely respect advocates who speak up for ME rights, journalists, science writers and psychologists who are all willing to become lone voices in their field because they recognise the injustices in the MECFS world. I've learnt a lot in recent months from them all.

Being new to tweeting, I have found some exchanges of recent days to be shocking. What appears to have started as people giving respected and knowledgable opinion on NIH's unpopular choice of Dr Walitt as research director, has descended into unpleasant, personal insults worthy of a primary 1 classroom, if it wasn't for the colourful language.

We as MECFS sufferers are outrageously, spittingly, venomously angry (I certainly am tho' I'm sure that some feel beaten down and demoralised instead) at the whole MECSF situation. Academics who support ME admit to being angry too and actually it's encouraging to see how very stirred they admit to being: 

While speaking in The Netherlands yesterday, David Tuller was reported to say - I have to be careful when speaking in public because I'm so enraged, I can be defamatory and can be sued.

That we are all angry together should stop us from taking sides - and at one point during the emotionally fired tweeting it was suggested that some UK patients were taking sides against American views. I don't take sides! And there should not be sides! I respect all involved and I undestand that people who want the same endpoint as me might not always share my exact views along the road to that destination.

Twitter and FB are very fast means of communicating and can turn an educated and respectful discussion into an online version of a public brawl. Social media must not take over from personal and private correspondences. I'm not suggesting we go back to Victorian etiquette... My Most Egregious Sir ...but that we maintain decorum in our debate.



Footnote: a special thanks to Maija Havisto who very skilfully and helpfully tweeted from the presentations after the showing of 'The Forgotten Plague' in The Netherlands yesterday. She tweeted:

Tuller (said):: The PACE authors are very aware their answers are inadequate. There's a court hearing in the UK 
in April ... !

13. PACE Trial complaints procedure

A few years ago a Scottish primary school teacher became headline news, joined by an English vicar a few years later, because she told a class of nine year olds that Santa wasn't real. The vicar, in his Christmas address to a school assembly, added the grisly legend of St Nicholas rescuing three children who had been killed by a butcher and placed in a barrel to be pickled and sold as ham!

What a nightmare! Doing a teaching job well for years - I knew the teacher: she was excellent and much loved as a P1 teacher to one of my children - and finishing your career as headline news in the local papers for an off-guard comment during the ever-hectic and increasingly frantic run up to Christmas. Parents were reported as saying their precious little pumpkins had been traumatised. Children gushed histrionically at their parents. 'You lied to me. Never again in my life will I trust you.' It's harsh that this teacher, being accountable for her actions, received such a public grilling and a quick retirement. Everyone who works in education, health, social care or the church knows that they have to be accountable for their words and actions at work and many teachers or vicars reading this (are there any?) might say, 'There but for the grace of God ...'

This is why I am so surprised that the researchers of the PACE Trial seem NOT to be accountable for their work when it is very publicly being ... at the very least queried ... but more accurately ... complained about vociferously.

Do research establishments like QMUL not have a complaints' procedure? It's not just one person complaining for example that the trial's researchers have connections to the Dept. for Work and Pensions or that a patient could enter the trial with a score of 60 that marked them as disabled then end up with the same score and be marked cured.

There is a queue of complaining people that stretches further than most ME sufferers can walk. More than forty highly-regarded doctors, scientists, researchers from around the world have written to the Lancet to request clarity and transparency of PACE's research methods, ME charities have joined in and on social media the queue is lengthening daily with ME sufferers voicing complaint.

"The best research evidence is usually found in clinically relevant research that has been conducted using sound methodology." (Sackett D, 2002)

All that people are seeking is reassurance that this research has been conducted using sound methodology. It is really very important because this research is the evidence-base on which ME treatment will continue to be based for years to come in the UK and abroad. This research is the evidence that feeds the NICE Guidelines, The Cochrane Report and that makes MECFS clinic staff able to say 'Research proves Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy) are the most effective treatments for MECFS' (while patients say GET worsens the condition). That makes CFS clinic staff securely accountable for offering these treatments and above complaint. This evidence will provide information about how GET and CBT can improve functioning of people with MECFS to the department that deals with benefits and pensions thus continuing to deny sufferers the care and benefits that they not only deserve but are vital. PACE could pave the way for further UK (and USA?) funds being diverted from biomedical research into more of the same psychological studies.

The evidence-base is the rock upon which treatments are built. Very, very important! We all want to know that The PACE trial is built on solid rock and not sinking sand.


(Over my word limit today - 600+ words - but it's the most important issue for MECFS sufferers at the moment)

12. Sacket says ... It's important to listen to patients.

I'm going to be a bit controversial here and use The Sackett model to support Simon Wessely's stance on MECFS. I'm teasing it out as I write so let's see if it stands up to my scrutiny in the framework of Sacket's model.

"The best research evidence is usually found in clinically relevant research that has been conducted using sound methodology." (Sackett D, 2002)

Treatment for any condition is based on evidence, and one of Sackett's three circles says ... 'BEST RESEARCH EVIDENCE'. We can look back and criticise the management of ME in the 80s, 90s and noughties but was treatment at the time not based on the most up-to-date research? It was! This is why, as outlined, in my previous blog many patients are disappointed (is that a strong enough word?) that all but psychologists wanted to win the MECFS game of pass the parcel. Because all or at least most of the research became psychological.

Using Sacket's model to look at it:

- the research was up-to-date
- the research was seemingly relevant
- there was no other contemporary research to lean on.

So that became the 'best research' that contributed to the evidence base.

Two words jump out at me from Sackett's quote above: 'sound methodology'. Did anyone question or call for transparency in the methodology of psychological research in the past three decades (pre PACE). There was no big outcry from the science world that I am aware of.

So. It's all sound!

So, MECFS practitioners in the UK whoever they might have been during these decades based their treatment on this sound, unchallenged research and I would suggest cannot be criticised for doing so because it was the most up-to-date, professionally well-thought-of research of the time in the UK.

But if I bring Sackett's third circle in here we can start to question how the research went on unchallenged for so long. The third circle that Sackett says is an integral part of forming an evidence base for any treatment is 'CLIENT VALUES AND PREFERENCES'. MECFS 'clients' can certainly not be accused of staying silent over the decades but can be accused of being unheard, and even worse, at times, silenced when repeatedly giving opinion that the illness is physical.

In looking for the evidence base for past MECFS treatments, it is clear now that Sackett's 'EXPERTISE ' circle and his 'BEST RESEARCH' circle were both crammed full of psychologist and his 'CLIENT VIEWS AND PREFERENCES' one was filled to bursting point with clients/patients shouting their views into a vacuum.

So, if I'm right in teasing this out, Wessley and other psychology researchers can look at one Sackett circle and justify that their research was all that there was to form an evidence base for MECFS treatment. However, overlap the three circles and patient voices should have been influencing the way that research went. This was never allowed. Patients were vexatious, militant, fitted their Wessleyan psychological profile if their opinion was voiced.

Imagine Evidence Based Practice as a three legged stool, Sacket's model has 'client voices and preferences' as one of the legs. Without them the stool topples.



​​

11. Professional Expertise in ME

Let's take the Sackett model and look at the evidence-base for today's treatment of MECFS (see previous blogpost).

Sackett says that sound treatment for any medical condition is founded on:

1. The expertise of the medical professional.
2. The best evidence from research.
3. The patients' values and preferences.

All three are equally important.

Let's see where MECFS fits into the diagram by asking a question for each of the circles.

1. Is there any clinical expertise in MECFS in the UK?
2. Is any MECFS research in the UK based on sound methodology?
3. Have researchers/ clinical experts ever listened to MECFS patients in the UK?

Many patients - and very possibly some researchers and academics around the world - would answer a blunt and perhaps cynical, 'No' to these questions. If the answers are all no, the centre bit where the circles overlap lies sadly empty with no evidence of any successful treatment for MECFS to show for all the research that has been done over the last few decades. Some might say, 'Yes! That's how it is.'

I do want to take a less blunt, less cynical look at this ... so let's not say, 'No' too quickly and we'll try to answer each question more fully.

First, in this blog the question is:

Is there any clinical expertise in MECFS in the UK?

There seem to have been more people researching than treating MECFS since the 1980s and in the UK they are mostly Psychologists. Latterly they have been joined in ME Clinics by Physiotherapists and Occupational Therapists whose work is based on research by ... Psychologists, making Cognitive Behaviour Therapy one of the leading (evidence-based??) treatments to improve physical function of MECFS sufferers.  

I've read that some patients believe MECFS was 'hijacked' by Psychologists in the 1980s. It seems that MECFS management is a game of pass-the-parcel and whenever the music stops sharp-elbowed Psychologists grab the parcel ... made easy for them because nobody else wants it. In fact, Neurologists, Rheumatologists and Consultants in Infectious Diseases seem to consider it a poisoned chalice thus tossing the parcel in great haste to the next person like an electrifying game of Pass-the-Bomb.

It's understandable though that these medics, unable to find any clear, consistent symptoms that place MECFS in their specialty, would feel right in distancing themselves and their professions from the condition. I wouldn't consider any of these professionals fools, so I cannot believe they were truly wowed by the false-illness belief hypothesised by psychologists, that forced the condition into a psychological framework, like a jigsaw piece forced into the wrong ill-fitting slot. But perhaps it was easier to wash their hands of it knowing there was someone - an ever willing Psychologist - to pick it up. It seems no medical professional lingered long enough on MECFS in order to question it and to look for an evidence-base other than, it's all in the head.

So it seems in the UK that the search for an evidence base up 'til now has rested with Psychologists as the 'experts' in the field. 

My next blog will add in the next two circles of Sackett's model, the research evidence and patient values and preferences and try to tease out how strong the evidence base is for today's treatment of MECFS.


Footnote: I have encountered an amiable Infectious Diseases Consultant and an extremely skilled and revered Neurologist who showed huge knowledge of MECFS and gave me very helpful support, but in my experience these professions do not want to hold the overall responsibility for MECFS. 

10. Evidence Based Practice

Dr David Sackett is a big name in Evidence Based Practice (EBP). 

What is EBP? Firstly, it is really important! It's what all medical practice should be based on. It's what all medical professionals should base their work on. All medical people have to be accountable for what they do and they can be by explaining what evidence they are basing their work on.


If a podiatrist decided that all patients referred with an ingrowing toe nail should routinely have their toe amputated, colleagues would rightly ask, 'Where did you get this idea from?' i.e. what is the evidence you are basing your treatment on. The podiatrist might say, 'It's my own idea and I think it's best. I have many years of experience and this is what I believe.'

SACKETT SAYS THAT CLINICAL EXPERIENCE IS ONE PART OF EBP.

The podiatrist's colleagues would ask, 'What do your patients think about this? Some patients might bow to experience (one would hope not); others may run (or hobble) away in horror.

SACKETT SAYS THAT PATIENT VALUES AND PREFERENCES ARE ONE PART OF EBP.

The podiatrist's colleagues may ask, 'What research has proven this to be a good treatment for ingrowing toenails?' And there would - I hope - be none.

SACKETT SAYS THAT BEST RESEARCH EVIDENCE IS ONE PART OF EPB.

In the SACKETT model these three parts make Evidence Based Practice; they must all be present for a strong, sound evidence base. Take one away and it weakens the evidence; the base starts to wobble.

Sackett's diagram shows his model very clearly:

So, how does our podiatrist fare with this diagram to guide us:

His expertise and experience could be questioned, but he is confident he is right. 
Some very hardy and trusting patients may be okay with it.
But it lacks any research backing. No research has been done to prove it is a routine treatment for ingrowing toe nails. 

So this is not sound evidence based practice and hopefully patients and colleagues would question it and stop it before it started. 

(Please note I am not a podiatrist and I am assuming that amputation of the toe is not the routine treatment for ingrowing toenails - comments below please if I am mistaken.)


I'm interested to look at the evidence base for today's treatment of MECFS using Sackett's well and widely respected model of EBP.

Have a look at this model and see what you think. I'll be putting my take on it in my next blog.


I've been quoting a lot of what ... Simon says ... in my blogs. Now I'd like to see what SACKETT says!