Friday, 11 May 2018

Trust, in the context of ME

Trust issues run through every level of the ME experience.  

Being unable to trust our physical bodies to perform, is just the beginning.  Trust, in the context of ME, goes way beyond personal, physical problems.  The problem of trust, runs right to the top of our medical establishment.

To put things in context, I'll start with a little of my own story.

Before ME, I trusted that my body would heal. Sure, a couple of weeks off work with a bug could be miserable, and the few weeks after returning to work might be tough, but I always expected to become fully functioning again.  

So in March 2012, when I became ill, I simply trusted that I would recover, and if necessary, that the health services would help me to do so.

I went to the doctor, first just to get the necessary sick lines, and then with increasing frustration.  The doctor told me I probably had "chronic fatigue", and that I should eat well and exercise.  "Three short brisk walks a day" she said.

I trusted this advice from my doctor.  I had no reason, then, to doubt.

The exercise didn't help, of course.  In fact it made me worse, but the doctor suggested I should continue.  And here trust rears its head again, because my doctor trusted the guidelines from NICE, that she had read, and I in turn was supposed to trust her. 

My doubts started.  

So I went to the internet, and other patients told me a different story.  "Exercise can harm you!", "Don't do it!", and "Please be careful!" were the amongst the flood of messages that came my way.  

A few months later, I saw an NHS consultant at a Fatigue Clinic in Belfast. Here, after a plethora of blood tests, I got some good advice: "Do only 60% of what you can do without symptoms" he said.  But I got no diagnosis!  With hindsight, I suspect this was so that I would not be pushed into Graded Exercise Therapy.

Did this consultant not trust other doctors to recognise my problems with exertion?

Gradually, I withdrew from NHS care.  The clinic offered me no further treatment, and a return to my doctor, only left me with antidepressants or cognitive behaviour therapy as options.  I knew that neither of those would help, and thankfully had the courage to say "No!" despite feeling almost desperate enough to try anything! 

Next I had to run the gauntlet of the miraculous recovery stories told in the press.  Reading these, it would seem to the ordinary person, that recovery from ME should be easy.  Just try this miracle process, pill, or potion; say a few magic words; think positively and all will be well. Easy! "What harm can it do to try it?"  

No wonder ME is not taken seriously by the healthy world at large.    

Healthy people say things to us like: "We all feel more tired as we get older you know", or "Everyone has to push themselves to get things done", and in so doing they attempt to normalise a disease that is far from normal. I have heard many ME patients say, that those around them don't believe they have a serious illness. 

So why are first-hand stories from the chronically ill not trusted?

This issue goes well beyond ME, and suffice to say that the media have cashed in on the "scrounger" narrative to try and imply, that all those who are long-term ill are actually just malingering. 

Sadly the even medical establishment now uses, Medically Unexplained Symptoms  (MUS) to label patients who seem not to respond to standard treatments.  The suggestion here is, that these supposedly attention-seeking patients, should be diverted to psychiatric services, and that doctors should stop trying to seek physical explanations for their condition.  

This is a tragedy in the making, and in my view everyone, including the currently-healthy, should be very distrustful of this label.

Back to ME now.  

The current NICE guideline for "CFS/ME" shows that Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) are still recommended.. These psycho-socially based therapies come with no caveat to indicate that many patients have reported them to be harmful. 

Can we not even trust NICE to listen to patients? 

NICE say they are listening.  Last year they indicated that they would not be reviewing the CG53 guideline, but after an outcry from patients, they agreed to review it, afterall. So far so good, but patients are still very concerned by the processes NICE will use, and whether NICE will be genuine in taking on board the concerns of ME patients. 

I have to wonder if NICE are swayed more by authority than by clear scientific evidence?  

The PACE Trial (from 2011) was supposed to be the definitive trial to demonstrate whether the psycho-social therapies of CBT and GET were useful.  The many problems with the PACE trial are well documented elsewhere, and those problems are so scientifically shocking that the PACE Trial should now carry no authority whatsoever.  Yet, the PACE Trial authors continue to assert that these therapies work, and that no harms were found from their use.  

Do NICE simply accept these assertions on trust?  Have they not investigated the flaws of the PACE Trial for themselves?  

Funding bodies also have a problem with patient trust.  

These organisations are supposed to choose the best research projects to fund.  Yet, it seems that psycho-social researchers are the only ones to receive the bulk of government funding. 

Do we really want yet more behavioural studies, whilst patients are dying in darkened rooms from severe ME? 


There is so much more that I could write about "trust" and the treatment of ME, but I'll admit my spoons are now running low.  I will end by saying: 

The days of blind trust in medical expertise are over.  

My trust is now placed in those who are prepared to take on the system; to hold unsubstantiated assertions to account; and to campaign for the massive paradigm change that is required to ensure ME patients world over are treated fairly, and safely.

My message to anyone with medical influence:

Do not ask us to trust that things will now be done right.  

Instead demonstrate your determination to right the wrongs inflicted by a misplaced trust in the psycho-social paradigm; by facing those difficult decisions; and by finally overturning the utter neglect of decades past. 

Thank you.


PS I have intentionally not referenced this piece so that it can be read easily.  For more information I  recommend the writings of David Tuller on Virology Blog, and the patient discussions on the forum Science 4 ME.  


  1. I haven't trusted the medical establishment in years. I don't mention the ME/CFS much. I try to appear as well as possible in routine exams - except that I overreact violently to most meds, and switched to a cardiologist who listened, and told me to take nothing, and not take my blood pressure! He's the only one out of the 15 doctors who were involved in my 'care' when it took them over two weeks, four hospitalizations, and three cardiac catheterizations to find the 95% blockage in a cardiac artery and stent it - after two previous stents and an angioplasty where they couldn't put a stent!

    In addition to the huge amount of energy it takes to go to a doctor, I disbelieve most of what they say.

    I keep them for acute care. I hope I can tolerated their meds for something short, like pneumonia.

    All this from a firm believer in Western medicine and research - who has been badly served by it in the specifics.

    1. It does seem that we need to become our own experts. There are good doctors out there who are prepared to research to help their patients, but I worry the pressures placed on many of our medical professionals means they do not have the time to properly listen to patients, nor to properly assess their needs and seek the best solutions for them. Too often they are pushed to keep turn around times quick.

  2. Excellent blog Sally. Thank you. As well as MUS, there’s also the issue of ME Sufferers now being given a diagnosis, by Neurologists, of Functional Neurological Disorder which, in spite of sounding ‘biomedical’ and validating to many patients, actually means that the symptoms are emotionally generated. I have already met several patients who have been given a diagnosis of FND and they were all under the impression that the diagnosis means that there is a physical cause, and were completely unaware that this diagnosis means that their symptoms are emotionally generated. There’s also the issue that NHS England is rolling out their Improving Access to Psychological Therapies (IAPT) initiative, whose advisers include proponents of the Biopsychosocial Model of ME and which recommends High-Intensity CBT and GET for ME Sufferers. Patients being referred to the IAPT Service, to help them deal with the psychological stress of living with a long-term illness, are not being told this and may well be unaware of the risks of CBT and GET. There are huge issues around Trust here.

    1. Totally agree Carol. There seem to be so many sleights of hand that they are using to fob patients off. I am horrified by IAPT, and also by the pushing of mental health screening into schools. I have no problem with services being available when required, but somehow this feels different.

  3. Hi Sally, great blog. I believe that GET can play a part for some people towards the end of their journey but for most of the ME/CFS population GET is gong to make their problems a lot worse. I can only see GET working for those who are effectively already well on their way to recovery and no longer have the whole "crash" cycle going on.
    As for CBT, I have heard and even met people who have recovered using techniques like the lightning process but I have also heard stories from many that had negative experiences with it. I did the "ANS Rewire" course which had a big component of CBT but for me it just made me feel a bit calmer and didn't improve my symptoms at all.
    Overall I would personally give CBT and GET both 2 out of 10 as treatments, at this stage all we can effectively do is manage symptoms and make life easier on our bodies. I have made a webpage showing all the treatments that I know of the feedback I have had so far has been awesome as it shows both medical and complementary treatments.
    My fingers are crossed that the biomarker test comes out soon!

    1. To be honest. I don’t think even someone on the road to recovery needs GET. If the physical ability is there, we will use it. However I do agree that it would still only be potentially useful once the disease process has ceased. And of course a bio marker cannot come too soon. :)

  4. Such a similar experience with trust being lost to the point of a prescribed overdose on medication and a emergency ambulance trip which almost did not pull out of, not to mention partners internal organ bleeding from another lack of medication checks. With medical professionals there is a scale like with any industry, and under-resourcing which causes more mistakes in time poor professionals. So for hubby and myself we found the phrases "trust but verify" or "trust no one" more appropriate (X Files & scifi fans). It is so rare to see informed consent, standard tests & treatment options provided nowadays. Even in cases like mesh injuries where there is the utmost physical evidence patients still get treated as if the physical damage and ripping of internal organs is just in their heads initially. Perhaps it is an unconscious and even conscious bias. MS patients underwent bias as well. Gaps in medical knowledge to date are still quite large and for many with diseases the rate of discovery, while faster with more genetic & finer testing equipment, is often still leaving more questions than answers, more fumbling in the dark. From a couple decades ago there was no knowledge of what caused some forms of MD, to today with update gene tests and some knowledge of how the degeneration develops, and to today an animal model for some. Leaps and bounds but many diseases need funding or else no accurate and detailed research is done, even palliative care is difficult to access, even for critically disabling and deadly ones.