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October 17, 2012

I had intended to write a more substantial post but my health has taken something of a nosedive in the last week. This was fairly predictable, given the amount of extra activity I’ve been undertaking – but it’s still depressing. As a result, I’m going to do a short update – just to keep the blog alive and kicking. Incidentally, I do regular mini-updates via my Twitter feed which can be found in the lower part of the sidebar on the right of this blog.

The worsening of my ME/CFS symptoms means that my general pain levels are up and my energy is even further down. My brain is desperately struggling with any cognitive effort and my body is weak, shaky and pulsating with neuropathic discomfort. My cardiovascular system is in overdrive which is unpleasant and periodically alarming. An inflamed throat/sinuses, headache and mild nausea come and go intermittently along with a sense of increased real/perceived activity in my immune system. My body temperature fluctuates wildly between hot and cold and occasionally it is hard to breathe. However, this is all pretty normal for someone with ME/CFS and I’m not actually bedridden at the moment – so it could be worse.

Recent developments in ME/CFS

The main story is that British doctor, Dr Sarah Myhill, who treats patients using mostly complementary medicine, has retained her licence to practise medicine. In 2010, a complaint was made about some of the content on her website which resulted in a disciplinary hearing before the GMC (General Medical Council). The GMC’s determination was published recently: Dr Myhill has received a formal warning but can continue to practise. This has come as a great relief to her patients who feel that she is one of the few doctors in the UK to take ME/CFS seriously. (I am not a patient of Dr Myhill’s.)

In the US, there is perhaps encouraging news that President Obama’s staff will be monitoring the Department of Health and Human Services’ activities in relation to ME/CFS (link here). Let’s hope that this is for real and not just electioneering.

In the media generally, argument and counter-argument continues between journalists/bloggers and ME/CFS patients both in articles and via correspondence from patients.

Requests under the Freedom of Information Act

I will write a full update on my own FoIA applications regarding the redactions in “The ‘Secret’ Files on ME/CFS” (see August 2012 Archives in sidebar) when I feel stronger. The judgment on the Department of Work and Pensions (DWP) file has been published on the Information Commissioner’s Office website (read here). Paragraph 26 is of particular importance. As you will see, there is some further redacted material to be made available although not all of it. When I know more, I will update here and do a fuller assessment of the status of the files.

I have noticed that many people are still referring to these files as “secret”. This factually incorrect and very misleading. The files are open to anyone who wishes to view them; the fact that they still contain a small amount of redacted material does not make them secret. I would be very grateful if anyone who mentions these files makes that clear – particularly when referring to older articles which will obviously still describe the files as being closed/secret.

I have recently become aware of other FoIA applications relating to ME/CFS. I have not yet done enough research to evaluate how useful they might be and, in any event, the appeal processes are still ongoing. Again, more to follow when I know more myself.

Ad hoc

“What terrifies religious extremists like the Taliban are [sic] not American tanks or bombs or bullets. It’s a girl with a book”. (read story here). My thanks to Paul Christie of Western Australia via Facebook for the wonderful cartoon containing these words.

And still the process continues… 

I’m still moving ahead with other ideas but it will take a long time. I realise that this is something I keep saying over and over again but it cannot be any other way for someone who lives with ME/CFS. As I said before, I promise I will update here whenever I have news AND my health is up to doing it.

My writing is far from its best at the moment but I felt it better to write something, even if it’s not up to the standard I would like, rather than nothing. I hope that, in doing this, some of you might understand a bit more about what it’s like to live with chronic illness in general and ME/CFS in particular.

As ever, thank you for reading this far. I wish you all well.

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