500 words on ME: October 2016

Wednesday, 5 October 2016

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!

9. ... from the previous blogpost ...

A few years ago I sat with Aunt Betty in her sunroom at the front of her bungalow in Bridge of Allan, with a view over to Stirling war memorial.

She was wonderful at telling stories, captivating. She talked about three of her father’s sisters, Maggie, Mamie and Susie who lived together in the early 1930s in a Victorian second floor flat in Montpelier Park in the Bruntsfield area of South Edinburgh. I was surprised to hear her mention a second floor flat because a grissly tale in family history had come down to my sister and I about a second floor flat in McDonald Road (off Leith Walk) in North Edinburgh.

Aunt Betty started by saying, she knew something was wrong when, one Sunday morning she ran down stairs to get the Sunday Post – she would have been in her mid to late teens. She said that every Sunday she would collect the Sunday Post from the letter box and read it a bit then deliver it up to her parents’ room. This particular Sunday, the Sunday Post was not in the letterbox. She was also aware that there was a lot of adult conversation going on and she and my dad were not sure what it was about. She realised later the incident must have been reported in the Sunday Post and the adults didn’t want the children to read it.

I said to Aunt Betty, ‘Aunt Susie fell out the window’.

She was surprised that I knew, but put me right – it was not Susie but Mamie. I told her that the tale had passed down to my sister and me that Aunt Susan had fallen out a second storey window in McDonald Road. I told her that I had often wondered why I was named after an Aunty who had met with such an end and indeed wondered if it contributed to my vertigo! Aunt Betty laughed and said, ‘No no no, Aunt Susie died a very respectable death.’

She told me that the three sisters had lived together and in her early thirties Aunt Susan, known as Susie, had taken ill with leukaemia. Her sisters had nursed her throughout and she was particularly close to Mamie. Susie died in her early thirties.

I’m not sure how long after that - death certificates would tell us – Aunt Mamie fell from the second floor window and died. The circumstances around her fall were not made clear at the time.

Aunt Betty finished by whispering, ‘I always wondered if Maggie pushed her!’

8. Prioritising the Priorities

My brain hurts from all the reading I could do; firstly the Cochrane Review that I interpret to mean we with ME should all join gyms and sod the consequences, and then, hot-off-the-press, what Simon says about data sharing.* So, I'll rest the brain and side-step to something lighter.

My visit to my aunt and uncle the other day (blog 6) made me realise how precious the balance of time and energy is. The basis of pacing oneself.

Conversation turned to family history. My aunt told of a bomb that dropped during the war on an area of Edinburgh called Craigentinny where she and my mum grew up. Their father, a Fire Warden, was out on duty while they and my grandmother joined community singing in the air-raid shelter. Craigentinny has an old tower dating from the 16th Century (witch burning time? See earlier blogs.) The tower took a hit. On exiting the shelter my grandmother was told that her husband had been killed in the bombing of the tower so she was astonished when he appeared walking jauntily along their street five minutes later. He knew nothing about it but was given a terrible row for giving her such a fright. Turned out that the caretaker of the tower had the same name and there had been a mix-up. For days neighbours passed their condolences to my grandmother. Such a shame for the caretaker to be caught up in a random dropping of left-over bombs after a more targeted bombing campaign over the shipbuilding area of Clydebank.

My uncle, who lived next door to my aunt as a child - they've known each other for nearly 90 years - described what it was like to emerge from the shelter to see blocks of flats and part of the tower lying in rubble and how readily people accepted the sight without any histrionics.*

I've been guilty in the past of not stopping to listen to the family stories... from relatives who are no longer around to tell them. Work and present day family matters intrude and then it's too late; my father's sister lived near Stirling at a time my mum had dementia and the kids were little. I'm very grateful that I found myself in Dunblane (home of Andy Murray) for a work conference one day and although tired I stopped at my Aunt's house near Stirling. It ended up being a long visit because she started a story I'd heard fragments of over the years. With the fragments pieced together the story had become a bit misshapen but my aunt reassembled it with the names in the right places and the outcome clearer if a little unnerving. I wrote the story down at the time so will try to unearth it from an old computer and add it to the blog.

Many people with ME/CFS find pacing to be a technique that is crucial to keeping going. Pacing, the balance between activity and rest, means prioritising. May I learn to prioritise wisely.

Wessely on data sharing

Craigentinny

Craigentinny Castle

7. Peter White cured my ME!

New to blogging and tweeting. Readership increasing nicely. But how to attract more readers? How to encourage people to leave comments? Thought of tweeting, 'Peter White cured my ME!' or '' Simon Wessely is my hero!' If I did that, I'd invite Jo Marchant* to join me in Scotland's Secret Bunker* in Fife (never been, but hear it's well worth a visit) and we'd take a year's supply of Maltesers and tea bags. (Marchant wrote an extremely unpopular piece of ME/CFS science-fiction in Sunday's Observer or in quoting a South African 'healer' it became science fairy-tale.)

I'd really rather share a year in the bunker with ... George Clooney ... or... who else? ... Ben Stiller ,,, or ... for conversation ... Andrew Marr.

Not sure my fellow tweeters would appreciate the irony in such tweets, except maybe Nasim Marie Jafry, writer*, who made me laugh out loud yesterday with her tweets about Marchants knowledge - that would be lack of - about ME/CFS.e

"I think my next book will be on a controversial subject I know nothing about, but I'll just include influential and bogus science. Sorted."

Marchant, writing about the cured patient:

" as a creative person, she found the total lack of spontaneity hard to accept. But the perfectionism that she feels contributed to her condition helped her"

Jafry:

: 'Happens all the time when I'm pacing ... I think, oh my god I'm so creative , This is hell!'

I can understand that many ME/CFS sufferers may find it hard to join in the laughter because there is too much suffering and it is made worse when uninformed journalists write poorly researched pieces on a subject they know little about.

I don't object to people writing on topics they are ignorant about but lack of research is glaring. I remember years ago reading Rose Tremain's captivating novel, Restoration, and being hugely impressed with her informed descriptions of life in the 17th Century (no witch-burnings, if I remember - that quote still rankles!) Tremain is an impressive example of a writer who always puts a huge amount of time into study and research, whatever topic she approaches. Lack of research is all too evident in today's media. Impressive, it's not.

I will never again read a medical piece in The Observer - or The Guardian, who owns The Observer - and believe that it is telling the whole, truthful story. It's surprising that nobody in editorial thought to check the evidence base for Knoake's and White's assertions before printing them for a wide and already largely biased readership, who have been fed Yuppie Flu and 'get more exercise' stories for years.

Marchant's Observer article on what she called chronic fatigue was a lengthy tome on a very narrow, one-sided view. I can't believe that a paper as highly regarded as The Observer would miss the chance to report on the real ME/CFS situation and on the national and international controversy that is the PACE Trial. It involves intrigue, disagreement, upset, questionable morals, cronyism ... I could list another fifty words to take me up to 500 ... torment, tragedy, beating down of the underdog by the powerful ... good enough for an Ian Rankin novel. But nobody in the media is picking it up! What a scoop to miss!

Could The Observer perhaps ask Rose Tremain to write a piece on ME/CFS? Or maybe Ian Rankin.

The Observer article

Scotland's Secret Bunker

Nasim Marie Jafry's book

5. A Scottish Rituximab Trial? 6. A Mummy Five Minutes

Hold the press! We have a scoop! One person in London has recovered from chronic fatigue*!

Hold the press! We have a scoop! Several hundred thousand people throughout the UK with ME/CFS are suffering in 'the shadows*', are not being believed, are being ridiculed ... by the UK press, by UK academics and doctors and by UK CFS/ME practitioners.

That, to me is balance.

This is the introduction to my next blog about balanced reporting of ME/CFS in the press. My 500 words will be carefully thought out so it may be tomorrow before it appears.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In the meantime, today's blog is about the effect on people of living with ME/CFS.

I visited my very dear aunt and uncle yesterday. My uncle is 91 and my aunt is 89. They both dispute this because they feel ... and also look ... years younger. I last saw them in ... August! I've been flattened, not by tiredness but by an exhaustion that defies definition; by recurrent infections; week-long migraines (that have been eased by a change of medication); by sore limbs and joints; by days when I could barely get out of bed. My family listen with dread when I say I'm going to lie down for five minutes ... it usually extends to three or maybe four hours and any plans for the day are squished. When I was little, my sister and I dreaded our mum saying, wait just five minutes ... we started to call it a 'mummy-five-minutes' and we knew it could last for many many more minutes or even hours (often because our mum, an avid reader, was gripped by a book she was reading.) I'm now the mum with the 'mummy-five-minutes' that are spent ... sleeping. (Incidentally, my mum also had a phone-voice! Did anyone else's mum have a phone voice? We had a rather poshly spoken 'aunt, who wasn't really an aunt, and we could always tell when mum was speaking to her on the phone because her voice became plummy.)

I digress ... back to topic... how ME/CFS affects lives. To answer this let's ponder what we would do if a real cure could be found for ME/CFS? I'm looking for one word but it'll take a few more until I reach that word ... I'd be a better support to my sister who's just started chemo after a cancer diagnosis, I'd take the dogs for a walk every day with my children, I'd stop daytime sleeping, I'd visit my aunt and uncle once a week, I'd go back to working full-time to a job I love, then have time for activities in the evening and weekends like most of my colleagues do - joining choirs is the popular one at the moment, which often prompts bursts of singing in the office, I'd ... there's loads more but the word I'm looking for is PREDICTABLE ... I'd make plans and I'd follow them through ... I'd be predictable.

PLEASE MAKE A COMMENT WITH ONE WORD THAT WOULD DESCRIBE WHAT YOU WOULD DO IF A REAL CURE COULD BE FOUND FOR ME/CFS AND, IF YOU WANT, WRITE MORE TO DESCRIBE WHY YOUVE CHOSEN THAT WORD.

.... Oh, and I would put the Christmas tree back in the attic!

Guardian scoop!

Excellent Voices from the Shadows film

5. A Scottish Retuximab Trial.

It's making me angry that I have been likened to someone possessed by spirits and demons (see previous blog.) I am averting my anger by thinking of solutions. My first thought is JK Rowling who is well known for financially supporting MS charities ... and ME is not far from MS ... a consonant apart if nothing else.

I want this blog page to be the equivalent of me standing on the roof of the Scottish parliament with a megaphone, which vertigo - and likely the police - more than ME/CFS would stop me from doing. I'd be shouting about how the UK establishment have shunned and belittled people with ME/CFS for decades and how I think Scotland's academics and doctors are above the cronyism that seems to have perpetuated the belief in the UK of ME/CFS being all-in-the-head and akin to witchcraft of the sixteenth century (you can see that Wessely's quote has really ruffled me!) I'd be shouting about how I hope the day will come when ME/CFS will be recognised as a physical illness such as MS or cancer and that the years of telling people to exercise and think happy thoughts (how the Telegraph recently reported it) will be ridiculed, as doctors would be if they gave cancer patients the same advice in order to shrink tumours.

In the UK, the Psychology approach to treatment is well entrenched and historically has had most of the UK government's ME/CFS funding. But now UK money is being raised for a Rituximab drug trial ... in London! (see link below). Nobody in Scotland will benefit. I would like to take the risk of being part of a trial. I wonder if Scottish MPs could recognise how very desperate Scottish people with ME/CFS are. I wonder if Scottish MPs could support funding for research in Scotland that ties in with the very promising outcomes of the Rituximab trials in Norway.

I'd love to ask Scottish MPs in Holyrood and at Westminster to find out more about ME and how it is devastating people's lives. I wonder if it is known how many people in Scotland are diagnosed with ME/CFS. In the UK it has been quoted as 250,000 for the last three decades, never increasing as more and more people are felled by this crushing condition.

I'd like to ask that ME/CFS practitioners in Scotland take a step away from the PACE trial whose methods have been widely questioned and that has prompted academics and doctors from around the world to write to the Lancet (see link below) asking for data to be released under the FOI act so that results of this much criticised trial can be verified. Only three British doctors joined nearly fifty others to write this letter. A sign that the British establishment is closing ranks?

I'd love to see a Scottish Haematologist join Norwegian colleagues and set up a B-cell/Rituximab research project in Scotland, with Scottish government funding.

I'd love to see Scotland financially supporting biomedical research for ME/CFS in Scotland. Any politicians, haematologists ... charitable fund-givers in Scotland listening?

Links:

London Rituximab Trial

Letter to the Lancet

2. Wham 3. Risk. 4. Witchcraft

I grew up in Barnton Park down the road from Sarah Boyack, now SMP, in Edinburgh. Sarah, I'm sure, will join me in remembering a childhood spent riding bikes with her friends and taking long walks exploring the not-yet-developed fields that surrounded the estate and to Cramond, where the beach was sandy, not strewn with grasses as now, and the river Almond was a great attraction for walking precariously on stepping stones and where we could sail in a rickety ferry to Dalmeny to walk for miles. All in all, a very active childhood. In my twenties I continued to be active, canoeing, as I've written about, at Craiglockhart Sport Centre and down Scottish rivers and, rather less successfully, in the canoe polo squad. Then I got ME/CFS.

RISK

I'm not averse to a bit of risk in my life. Canoeing down the rapids at Grandtully was at times hair raising, swinging on the branch of a tree (just before my fortieth birthday!) was risky, and now I realise foolish, as I badly injured both elbows, but they were risks worth taking.

So, I'm pondering risk. Someone called Annette has asked a question to the ME Association FB page about why it is taking so long for treatments to become available when trials like the Norwegian Rituximab one are showing such good results; results that seem to me unprecedented in ME history and leave me wishing I was Norwegian so I could volunteer and take part in trials. Annette mentions risks asking why patients can't take their own risks with treatments rather than waiting for trials to be completed.

My understanding of the Rituximab trials can be explained simply as ... The body produces 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 when there is no further infection to fight. Rituximab reduces the number of B cells. For a fuller, more scientific and knowledgable explanation see the link below.

I have in my mind a set of scales. The nice old fashions type where you balance solid heavy discs on one side and perhaps ingredients on the other. On one side I weigh the risk of treatment with Rituximab, which I understand also involves steroids and the risk of side effects that these bring; on the other I weigh the risk of continuing as I am. The risk of ... the loss of a thirty year career, loss of self esteem that comes from doing a job I love and am good at, loss of essential mortgage-paying earnings (loss of house, ability to pay bills and feed the family), loss of security, increasingly the loss of control over my own life. More important is the risk of ... missing out on, not the big milestones of my girls' lives but just the mundane everyday business of living, risking sitting on the sidelines as they fast become independent young adults.

I would volunteer in a flash ... not for any treatment, but certainly for a treatment that has reported such good initial outcomes as the Rituximab trial. I understand ME symptoms may be caused by different conditions in different people but like me, many with ME have repeatedly swollen, or if not swollen then painful glands, recurring infections of throat ears, urinary tract, and it makes sense that something is going on with the immune system ... Oh to be Norwegian!

Info re the Rituximab Trial

WHAM

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. I did try, and a very patient teacher allowed me to try repeatedly, but I never mastered this. So, I tended to skulk in defence and avoid holding the ball as much as I could because every time I took possession a large beefy teenager from the other 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 did 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.

I hope this isn't going to sound too cheesy but... my experience of ME is like catching the ball in canoe polo. Here comes the ball ... hey, and down you go. It's unpredictable. You can be in position of attack, go-getting, pushing to the winning line or in defence, trying to avoid the ball but the game, like life, moves quickly and ... wham ... you have the ball and down you go. The all elusive flip is the cure whether it's me trying to cure myself or me believing that one of the researchers will hit on the ... what? What might it be? One cause for ME with one specific cure?

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!'

1. Pancakes

I've woken up this morning after five days mostly spent in bed. The shower mat is gunky, the sink is caked in muck and the bed has the unfresh feel of being occupied for too long. This has gone on un-noticed for weeks but today with a window of fresh awareness and a modicum of energy it unsettles me ... no it's hard to find the right word ... appals? ... discomforts? ... saddens ... beckons me? ... No! It ... motivates me, and for half an hour I scrub and cleanse.

My mind drifts back to my early twenties when I proudly owned and used a drill, could do my own - minor - plumbing jobs, juggle a full time job with canoeing in evenings and at weekends, down the Tweed, The Tay and sometimes taking my place in the ladies' canoe polo team (which was in the same league as the youth team, so we faced great bruisers of boys up to 16 years old and I spent a lot of time - which the rules allowed - in the water!)

People say they remember the day they were struck down. For me, it was nearly thirty years ago and I remember a time of sore throats, red raw, excruciatingly sore throats, courses of antibiotic after antibiotic then the indescribable fatigue. Painful arms and legs and days when I crawled along the hall to get to the toilet. Struggling not to take time off work at the start of my working life. Driving forty miles to my work and forty weary, exhausted and at times dangerous miles back home in the evening. I wasn't struck down in an instant but was prodded, nudged then beaten down slowly.

The term Yuppie Flu had only just been coined and it seemed bizarre to me that I should have the symptoms of this illness that had only recently become ... popular? So, best to ignore and carry on, accepting the excruciating tiredness, every bug that hit me and taking to bed only on the days that crawling on the floor was the only option.

I'm cleaning well, scrubbing hard, bending down, reaching nooks and crannies. I realise it is not motivation that is driving me. It is anger. I am angry at this illness that has accompanied me through my career, my marriage, my girls' childhood years. The anger is showing results. The bathroom is cleaner, the bed is stripped.

The anger hasn't come from five days flattened in bed. It hasn't come from thirty years of relentless boom and bust. It's because my thoughts occasionally now drift to thinking that this illness has defeated me. I've reached ... not a crossroad, but a Spaghetti Junction, where every tangled road I try to follow leads to places called, 'Little Energy', 'Greater Pain', 'Loss of Working...ton!', 'Debt-Ville.' In fact the Spaghetti Junction starts to take a recognisable form. The roads start to spiral into ever decreasing circles.

Now I'm making a very good batch of pancakes - one of my best.

Popular Posts