The walling off that illness brings

At the end of January I spoke at a Scottish Parliament event to raise awareness about the dire lack of services for ME sufferers: there are currently no consultants in Scotland with expertise in ME - and only one specialist nurse in Fife. We do, disturbingly, have the Lothian ME/CFS clinic - again, no expertise in actual ME, it appears to treat 'chronic fatigue' - and people are reporting harms from graded exercise therapy on offer. I met a young woman who now uses a wheelchair because of being made worse by graded exercise. And a mother spoke of her young son having a seizure because of graded exercise. This is horrifying. And they are not alone, many with an ME diagnosis have reported worsening of symptoms because of exercise therapies they have been pretty much coerced into. This exacerbation of symptoms is unsurprising as ME sufferers have poorly understood mitochondrial dysfunction. We *cannot* exercise without provoking highly disabling post-exertional malaise. My abnormal EMG and muscle biopsy from 1984 demonstrated this.

The platform of the event was a twenty minute showing of UNREST film (my review here) and Jennifer Brea, the director of the film, spoke via Skype. When it was my turn to speak, I was more emotional than I thought I'd be, I had to pause a few times, the words clogged in my throat, I was sure I would cry. There was  a palpable collective trauma in the room, the harm visited on ME patients was obvious in the mood of the audience. I do hope the sixteen MSPs who attended will follow up with action and address the issues this much neglected patient population faces. I gave a copy of The State of Me to Joan McAlpine, the MSP for South Scotland, we were both at Glasgow Uni in eighties, so I thought the novel might resonate for her.

There is going to be  a debate in Westminster on 22 February about the harms of PACE - this has been secured by Glasgow North West MP, Carol Monaghan. It is crucial - and hugely welcome - that this is happening. The tables are turning, though the clowns who have harmed us will not bat an eyelid and indeed continue to defend the nonsense of GET/CBT as primary treatment for a neuroimmune illness - the fact that patients are being made more ill doesn't seem to touch them. How convenient to wear so easily such armour against the truth.

I have been thinking about autumn 1983 when my fellow students who had completed their years abroad were gathered excitedly in the Modern Languages Building for the start of the new academic year - the Junior Honours year (our fourth year of study). There was so much to catch up on - this, of course, was pre-Internet - you had to actually see people or phone or write in order to know their news. I remember having to sit on a table in the hallway - it was mobbed, my legs were weak, I had constant pain in my spine - and feeling entirely walled off from the buzz and the joy of it all. I felt like an impostor.

I had only been able to do six weeks of my year in France and had to abandon it in the end. I would  not be starting Junior Honours - I'd been on course to do joint French and English Honours and got glowing comments in my second year English exams -  but had now signed up for just one class a week, which would enable me to finish an Ordinary Arts degree. I'd been diagnosed with Coxsackie B4 by then and had just started seeing Professor Behan - happily, there was an ME specialist in Scotland in 1980s - but I'd not yet had my ME diagnosis. I was very poorly but, there I was, still trying to keep a foot in the well world - much to my detriment, of course (I had no idea of the horror ahead). I could cry thinking about it now.

Collapse of Scottish Cross Party Group on ME

Very disappointed to see that the Scottish Cross Party Group on ME is no more.  I attended an event in May at the Scottish Parliament.

It is so, so, so vexing to see that thirty years on from my own diagnosis that the conflation with 'fatiguing illnesses' goes on, undermining patients with this catastrophic neuro-immune illness. I blame those medics who enabled the conflation to occur in the first place. I strongly believe that if Simon Wessely had not involved himself in ME, the landscape today would be much less divisive, though we may still not have all the answers.

Politicians are, sadly, not being adequately educated. It would seem that unless you actually suffer from neurological ME, or care for someone, you simply CANNOT understand why it is so damaging to mix ME with CFS and shove it under the disastrous umbrella of fatiguing illnesses. I am so sick of it all. These 'CFS' scientists have offered me, and countless others, NOTHING to alleviate our symptoms  - or cure us - and  have only squandered precious resources on psychosocial therapies (that are entirely useless and harmful if you have ME).

I'd also like to quote from a source I respect very much:  "The issue at the heart of this impasse is one of definition and compromise, and the very great harm that can result, and - as can be seen in England – that has resulted from bargaining away classic ME as a distinct organic neurological disease, in favour of the umbrella term ME-CFS..."

'Bargaining away classic ME' is a perfect description of what has gone on.

And I know, know, know that people with ME are often mislabelled with CFS and vice versa.  I am not criticising those with a CFS diagnosis (often PWME are accused of such), that would be ridiculous. I am criticising a status quo that has enabled the diagnoses to be fudged, perpetuating obfuscation and chaos, and watering down of a neuroimmune illness.

And people are often misdiagnosed with ME, full stop!

I often ask myself, why is it that ME patients don't - understandably - want to be conflated with CFS patients, but CFS patients don't seem to mind at all being lumped in with ME patients? I would be delighted if graded exercise and CBT could make me better (as Simon Wessely claims), and I would  definitely not want to have a more difficult illness to treat. The ME-CFS partnership benefits no one.

I'm closing off comments here - I really have no energy or desire for further commentary, I just wanted to highlight the sad SCPG situation -  and encourage people instead to comment on the ME Association thread if they wish (I have a couple comments up). I am just glad that people with ME in Scotland have, perhaps, been saved from the mirroring of chronic fatigue centres that exist in England*.

*update. Since writing this, a CFS fatigue clinic has opened in Edinburgh.

Educate, educate, educate!

Have been so preoccupied with my mum being ill this last ten days that ME International Awareness Week has had to go on the back burner. Scott blogged this on Monday and it was nice to see this review going up on Amazon and Goodreads. I like reviews that quote from the book - once I knew the novel off by heart, but with time you forget. Nice to see snippets and be reminded of what you wrote.

I managed to attend the ME Awareness Cross Party Group event at the Scottish Parliament last night, organised by Mary Fee MSP, which I hope got more MSPs engaged, though I'm not sure how many attended (mine didn't, disappointingly). I really was so wrecked, in that zone of feeling outside everything but somehow you chat through it all. I cheerfully told Mary that I'd voted SNP in the council elections (though I'd swithered in the booth); I hope she understands my mishmash of a head - true cognitive dysfunction, momentarily confusing an MSP you know is Labour with your own MSP who is SNP - and that she didn't go home and burn my book.

The great thing about an ME event is that when you have to suddenly sit down on a trestle table, or the nearest thing, no one bats an eyelid. I took along a copy of The State of Me to gift/donate and gave it to a charming young woman  who has been ill for fourteen years. She looked like a Southern belle, I was struck by her demureness.  I didn't mix as much as I would have liked to, but I did meet some inspiring people and left with a feeling of hope. There are, thankfully, enlightened medics (I heard Dr Greg Purdie of NHS Dumfries and Galloway speak for first time), politicians and teachers (Can you imagine the horror of your sick child being forced to attend school?) out there, but not enough has changed since my diagnosis in 1984 - so much time and money wasted on bogus  'research', too many shutters coming down. Yes, there are chinks of real progress, but we still have a huge uphill task, we  need to educate, educate, educate - and those in the dark need to want to be educated, they need to come forward, it's a two-way process. Otherwise we are just preaching to the converted.

Thanks again to Mary Fee, and the hardworking charities who attended, I didn't manage to look at all the stalls and missed a demo of a fascinating VLE (virtual learning environment)  project in development from Perth and Kinross for children who are missing out on the school experience (not just educationally but also socially) because of illness.

And the Garden Lobby is a gorgeous space.

* Just heard that 17 MSPs attended, good news indeed!

** ME Research UK's summary of the event.