From Tightrope to Roller Coaster and back again – the topsy turvy world of ME/CFS

From Tightrope to Roller Coaster and back again – the topsy turvy world of ME/CFS

When my ME was relatively mild and I was juggling a life of part-time teaching with being a single parent, I described (to myself) living with ME as walking a tightrope. If I took a few more or bigger steps, if I had too many things to juggle, or a puff of wind unbalanced me, I’d wobble and fall off the tightrope, lie wounded under it for days or sometimes weeks, and eventually climb my way painfully back on again and struggle to keep going.

It’s just the same now my ME is severe, but now the smallest misstep on my tightrope  topples me, the tiniest wobble tips me off, and I am forced to spend 99% of my time every day more or less horizontal, with only a very few excursions on my indoor tightrope – doing essential stuff to keep myself alive and fairly clean.

And what do I do with much of that horizontal time? This is the bit where the rollercoaster in the title comes in. I climb onto the online roller coaster of ME/CFS news – research, clinical care, government guidelines and policy, media and social media coverage, people sharing their personal experiences. 

One moment it’s the dizzying heights of well conducted research projects, accurate and supportive articles, or hopeful changes by government bodies.  Minutes later, before I have time to enjoy the view from the heights, I’m on a nausea inducing plunge down again as yet another media pundit or researcher misinforms the public and clinicians about ME/CFS, or denigrates the character of patients, another person with ME/CFS meets ignorance and gaslighting from clinicians.

I find my safe space, my safety belt on the news rollercoaster, my cushion when I fall off my personal tightrope, on an ME/CFS online forum. It’s the only place where I know my symptoms, almost complete isolation, and lack of medical care will be understood, because others are experiencing it too, and it’s sure-as-hell not understood by most clinicians, including my GP, or by many  sufferers’ friends and families. The forum is the only place where it’s OK to grumble, to get angry at injustice, and to share the ups and downs of that never ending rollercoaster of worldwide news and personal suffering without fear of being misunderstood or rejected. A place where we can tell each other when we tumble off our tightropes and we know others will reach out their hands from around the world to try to cushion our fall.

This article is planned to be an update of the last 4 years of ME/CFS progress since I wrote my last blog article, but I can’t do it all at once. The task is too big, and I don’t have the stamina to splurge through 6000 words in 2 days like I did back then. So this is just a taster, with, I hope, more episodes to follow. I’ve decided to start with a few highlights and lowlights from the last week or so.

Let’s start with the good bits – and there has been some seemingly really promising news. The UK All Party Parliamentary Group on ME/CFS published an excellent report called ‘Rethinking ME’ that highlights the need for much better research, medical education and medical and care services for people with ME/CFS, in line with the 2021 NICE guideline (a lot more to tell about that in a future episode). 

The launch event for the report was addressed by the Secretary of State for Health and Social Care who understands the needs because he has a relative with ME/CFS, and who has promised action. There was excellent coverage in The Times and iNews, and a Womans’ hour program. The rest of the media ignored it. There were other political excitements going on – ME/CFS doesn’t matter to most of the media. 

It’s hard to be excited by politicians’ promises until something concrete and positive actually happens, having been disappointed so often before, and the media coverage was sobering – with news of recent cases of mistreatment of very severe ME/CFS sufferers leading tragically in one case reported to death. This should not be happening. There’s a lot more to say about why this keeps happening.

And that was supposed to be the dizzy heights – a rather nebulous promise of action. 

Now for the bad news. Just as things seem to be looking up at government level in the UK, the Centers for Disease Control in the USA took a big step backwards by inviting as speaker to address an ME/CFS Stakeholder Engagement and Communication call, a doctor who recommends CBT and graded exercise for people with ME/CFS. The reaction of the person at the CDC who is supposed to know about ME/CFS showed yet again that they really don’t get it. In Denmark, a leading proponent of the psychosomatic views of ME/CFS published an article in a Danish Medical Journal critical of the NICE guideline’s rejection of CBT and GET as ME/CFS treatments, insisting Denmark should not follow suit. And attempts by academics (who understand how research should be done) to get a paper full of statistical errors on ME/CFS and work corrected or retracted failed, as so often before, with the authors of the badly flawed paper, one of whom was a leader on the PACE trial, seemingly unable to comprehend just how bad their research continues to be. 

I’ve left the most egregious down swoop on the rollercoaster this week to last. I find it almost unbearable. A huge backward step. And that is the publication of a book by Fiona Fox, the long time CEO of the UK Science Media Centre, whose mission is supposed to be to facilitate accurate representation of science in the media. They do this by writing articles that include statements from scientists about new developments in scientific and medical research, and by organising events for journalists and scientists to meet. All very laudable – in theory. 

Except when it comes to ME/CFS, where from the start Fox has accepted and promoted unquestioningly the views of the CBT/GET biopsychosocial (ie psychosomatic) proponents, to the exclusion of any criticism of their research or different views of the nature of the disease, and indeed the SMC under her leadership went much further and orchestrated wholesale and repeated denigration of people with ME/CFS, characterising all criticism of research as harassment and equating patients with animal rights extremists. We have observed this for many years, but to have it spelled out in a whole chapter in a new book purporting to be about the support of sound science is appalling. As a ‘popular science’ book this will undoubtedly help to perpetuate denigration and gaslighting of people with ME/CFS, and ongoing misinformation about how ME/CFS should be treated. More of this in another episode. 

That’s just a few of the recent highlights and lowlights from recent days. There is now of course the whole parallel world of Long Covid and the big question of what will happen to those sufferers who don’t recover, a subset of whom now fit the criteria to be diagnosed with ME/CFS. We see with dismay some of the same problems we have suffered – gaslighting, psychosomatic interpretations, pushing of exercise based rehabilitation, and expansion into the long covid arena of of quack therapies – all the same problems people with ME/CFS have experienced for 30+ years – all being played out in accelerated form in this new cohort of chronically sick people. And that’s for another chapter too.

I can see I’m going to be busy writing …

Watch this space.