Belief and bullying

This well-written article by Doctor Neil Abbot of ME Research UK appeared on the HeraldScotland website today.

The writer asserts that diagnosis is usually only the start of an ME patient's problems, and  talks with piercing accuracy about the two 'black holes' facing us - lack of credibility, and lack of joined-up, effective treatment. I have emphasised a couple of points that particularly struck me, below.

"Indeed, new patients, rather alarmingly, find two black holes awaiting them. The first is lack of credibility. The enduring stigma of “yuppie flu” and confusion with general tiredness means the public perception of ME/CFS is poor. Patients’ families can, therefore, be unsympathetic, as can doctors. Indeed, studies show that roughly half of GPs don’t believe the condition actually exists.

This is in spite of official and authoritative confirmation that the condition is genuine. The World Health Organisation classifies post-viral ME/CFS as a neurological illness. NICE states that symptoms can be just as disabling as multiple sclerosis, congestive heart failure and other chronic conditions.

The second black hole relates to treatment. Since the underlying causes of the illness remain unresolved and no treatment exists, prescriptions are given for particular symptoms, such as chronic pain or sleep problems.This can cause patients to become disillusioned, and many tell me they have not seen a GP for many years, preferring to struggle on alone rather than face what they see as a lack of understanding."

Let me repeat that first highlight:

 Indeed, studies show that roughly half of GPs don’t believe the condition actually exists.

I've tried and tried , but I still do not get it . Just how do you get to be so fucking arrogant that you declare the reality of an illness, in the face of all evidence, official NHS guidelines and WHO, to be a matter of what you personally believe - and refuse sick people treatment and help on that basis? 

I have had a doctor like this. For no reason she was prepared to give me, she decided to insist I started going in for monthly review appointments in order to be allowed to stay on the anti-depressants I had been successfully on (with yearly review) for several years. Fool that I am, I tried to debate this. All my previous doctors have been emphatic that getting the depressive to manage their condition is very important and a way of helping them feel in control of life, independent. I had not developed adverse reactions to the drug. I had not stopped being depressive.  I asked why and how she felt my condition had changed, to be forced into this backward step. 

Silly me, I tried to explain to her why monthly visits to her would cause problems - first, that my husband has to take a half day off work every time I need to go to the surgery since I can't drive any more; second, that I might not always be physically well enough to go;  third, that because my immune system is fucked, every single trip to the surgery results in me going home with an infection, which causes a flare of ME symptoms and I was reluctant to have this happen every four weeks. 

"That," she returned flatly "is because doctors' surgeries are for people who are actually sick."

And that was that. Because other health professionals had diagnosed me with ME, this doctor felt entitled to treat me as a liar and an idiot.  Quite simply, in her mind, no one with ME could possibly have a valid view on anything.  The intelligence that got me a degree from Cambridge, the years and years learning to manage depression, my previous incarnation as a successful working woman - the ME label wiped them all out for her and transformed me in her mind and eyes into this undeserving, sickening crazy woman - a waster taking up her oh-so-valuable time.  So if I wasn't prepared - without getting an explanation -  to do something that would make me sicker and might not be physically possible, she would take away the drug that helps me not scream at the wall and take overdoses. Because she could, and - I very strongly got the impression - she felt somehow that I 'deserved' to have my life made difficult. Yeah, that'd teach me to dare say I have ME and ask that this fact should be taken into account by my doctor!  Threaten to take away her drugs and see if she's really too sick to come in, eh?

It was the most frightening piece of bullying I have ever experienced (and I include in that a former partner who used to smash bits of furniture when crossed).  I wasn't asking to have more tests done, or be referred to a specialist, or any of that stuff we occasionally dream about. Just for my GP to respect the fact that my physical abilities are curtailed by my sickness.

I left her practice of course - in tears, sick and shaking with rage and helplessness  - and although my current GP is a helpful and respectful (and rather charming) human being, I do not ask him for any help that is ME-related. I can't imagine ever again asking a doctor for help where ME is concerned. The most I hope for now from our medical system is not to be treated with utter contempt and rejection. Which, let's face it, is a pretty low place to set your expectations. What the hell kind of doctor is proud of having achieved such a result?

And of course, I'm not the only one my GP from hell was calling crazy. I didn't diagnose myself. So presumably the GP and hospital specialists who made the diagnosis must be crazy too?  One GPs belief is more important than their experience? Because of course, the GPFH didn't do any tests (or psychiatric evaluation) to disprove the earlier decision of these medical professionals. It was enough for her that I had been given a particular medical label by them - one in which she - apparently like 50% of our doctors - have chosen not to believe.

And that's what I really, really don't get about the 'ME is an aberrant illness belief' camp.  They don't just have their opinion (for which they are never asked to provide, nor do they offer, any proof), but they seem to accuse anyone and everyone who takes a different view - patients, doctors, research scientists - of absolute bad faith.  Their minds are 100% closed to the possibility that what they believe might be wrong. You cannot change their minds with historical example (hello, 'MS as lazy man's disease' not so long ago?) or current research reports. 

I'm pretty sure they do not assert that all illnesses exist or not depending on their personal beliefs. What gives them the right to take that approach to ours? And what the hell makes them want to behave in such an unprofessional and unintelligent manner?

They react to ME patients not only with dismissal but an ill-concealed dislike which is baffling to encounter. 

One wonders sometimes if they are just venting all their frustrations on a group of patients it has somehow become completely acceptable within our health service to bully and dismiss.

As Dr Abbot says in his article:

for many a diagnosis is only the start of their problems. They have been given a label for which there is no known cause, no specific treatment and an uncertain outcome.