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.