User:Wikiterry

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Terry Ellison

I am a maths graduate who has worked in the IT industry for over 30 years, before having to retire early due to the onset of ME (see my WP user page for more bio details).

My life and CFS/ME

I had my first bout of ME in 1988 whilst in my 30s: I was bed-ridden for over 6 months, but I gradually recovered from this over next couple of years. However, this illness left me with a general susceptibility that seemed to be triggered by any immune-system assault – such as a virus infection especially during periods of high work stress. I regularly had post-viral fatigue type relapses (every few years or so) which typically lasted for a few weeks or so, but which I could work through from home, so this didn't significantly constrain my career.

I had a severe CFS relapse in December 2007, and I was bed-bound for about 18 months with my energy levels typically at around 15-20 on the CFS Ability Scale, and I lost about ~6kgs of muscle wastage during this period of inactivity. Once I had been diagnosed as suffering from CFS/ME, my local GP was supportive albeit within the current NICE guidelines for CFS. What this meant in practice, was that she offered moral support, but that was it: all attempts at diagnosis and active treatment effectively stopped (because NICE recommends that there are no cost-effective diagnostic tests or treatment for CFS sufferers).

She did offer Prozac to help me manage any psychological symptoms and an appointment to see a psychologist at a regional CFS counselling centre (nearly a one hour drive away). Whilst I was frustrated with my lack of mobility and inability to concentrate, my response was that I preferred the alternatives of reflection and positive thinking to the use of mind-altering drugs. Also given that it took me about two weeks to recover my already pathetic mobility and clarity of thought from a 30 minute visit to the GP surgery, a 3 hour round trip to see a psychologist / psychiatric consultant was a total waste of my and the specialist's time for what I regarded as fundamentally a disease with biological origins.

I came across Sarah Myhill's work and her website as a CFS sufferer. Even though we've always eaten what could be described as a w:Michael Pollan-style diet, I still found that taking supplements, magnesium and B12 injections as per Dr Myhill's recommendations helped me significantly – to improve my energy levels to ~30 on the ability scale.

Later, I dropped wheat from my diet and found that this triggered another step improvement in my stamina. (I didn't have obvious Coeliac symptoms, though my GP subsequently ran a test which confirmed this.) This increased energy meant that I could start a sensible pacing which helped to recover my muscle wastage, and for the next year or so, I varied between 40 to 50 on this ability scale. Living life 'to the half' was not full recovery, but it was better than having to lie flat in bed for 23 hours a day. By early 2010, my score rose to perhaps 80-90 over the course of about 2 weeks and see-sawed up and down on a seasonal basis, and over the next few couple of years I slowly recovered my fitness to a level comparable to my pre-illness level in 2007.

After the first couple of years, as I started to recover, I tried to reduce / remove my use of the mineral supplements, but on both attempts my energy levels fell over the next few weeks by perhaps 15 points, and this was quickly recovered by restarting supplements. No doubt some of the supplements are a waste of time, but life is too short to work out through trial and error which I need and which I could drop. After approaching two years of long term sickness, and with the remote likelihood of return to full-time work in the next year, HP and I agreed that I could be of little use to the company, so we terminated my employment in Oct 2009. In reality, I had to take early retirement because of my ill-health.

In the last few years I have pretty much returned to full health, and in terms of walking range, etc., I am probably fitter now than in 2007, immediately before my collapse. I have reduced my mineral suppliments to a low base level and hopefully this is al behind me.

My Involvement with this Site

When I came across Sarah's old site, I found much of the medical and dietary advice really helpful in managing my illness, however the site itself was dated and user-hostile. I started to work with Sarah and Hania to migrate the content to a Wikimedia engine. I have done any programming needed as well as the Wikimedia system configuration and administration. I have also done any migration scripting that was required, and helped by providing the bulk of the editorial and formatting clean-up (without altering the medical content).

By nature, I am a rationalist who believes in the Scientific Method. I do not claim that this is without fault: a clear example of this is that researchers can only publish findings in areas where they get the funding to do research in the first place, so a lack of evidence is very much not the same as hard evidence to support a counter viewpoint. The current canon of UK based CFS research is riddled with such political influences, and some stakeholders such as Professor Wessely are too influential in diverting limited funds to their own fields of research which results in starving other valid research avenues. Having said this, unlike many ME patients I don't challenge Prof Wessely's reputation as a gifted psychiatrist who has done a lot to raise the profile of ME/CFS in the UK medical community. I just feel that his work also often of little relevance to CFS sufferers whose illness is biological in origin.

Because of this lack of solid peer reviewed research, the proponents of a non-psychological causes for CFS (such as Sarah) also have to walk on thin ice at times. This being said, I find that Sarah provides a unique and valuable perspective – one that has made a real difference to me. I think that perhaps she occasionally presents her personal view as fact when it is one of a set of possible alternatives, and on the odd occasion I find the views of other experts more compelling. So even though my name is on the edit history, please remember that the content is Sarah's and not mine.

I continue to act as the site system admin pro bono.

My Sandboxes

Feedback

If you want to contact me then please use my talk page, or for comments relating to specific work pages on their respective discussion tab.

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