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A miserable case of ME/CFS – three years on

I’ve just finished rereading my ME/CFS updates.  Looking back over that year-on-year time-scale, I can see that am continuing to make progress towards recovery, even though it’s often a case of two steps forward and one step back.  I can now sit, walk and work perhaps at the bottom end of the normal range for someone of my age, and that is amazing progress compared to my condition a few years ago.  However, I must walk a tight-rope of energy limits and food intolerances.

My walking range is a good example: it was about 6 miles on the flat a month ago.  (I slipped and fell about 3 weeks ago and damaged my knee; the ligaments haven’t fully recovered so walking is pretty painful at the moment, and I am therefore a lot more sedentary than I would like.)  Before this mishap, I used to walk regularly to build up my muscles and range.  I could cope with 5 miles with minor tiredness; 6 would knock me out for the rest of the day; 7 would knock me out for a couple of days.  This is walking on the flat on a good surface, and these distances fall if the walking is on rough or hilly ground.  However, my limit is a pretty sharp ‘cliff’’ and pacing within the limit is sometimes hard to judge.  I've ended up abandoning a walk and phoning for a lift / taxi before the end on a few occasions -- which can be a pain if my car is at the end-point!  Even though I might seem fully recovered to a bystander, I would definitely say that I am managing my illness rather than being recovered.

General environmental aspects are also probably a factor.  For example, I have a holiday cottage a Greek island (Alonissos), and I find that my health and stamina noticeably improves when I stay there.  There is no intensive agriculture on the island (mostly pine forests and olive groves), and it’s in the cleanest area of the Aegean.  The local water is artesian, rather than agricultural run-off, so no nitrates, phosphates and pesticides, but lots of sulphates and other hard minerals.  Public transport is limited out of season, and since we don’t have our own car on the island, a lot of walking is mandatory. There is a small English community living on the island and to my knowledge at least three of them have, or are recovering from, ME.  (A fourth friend with ME died recently).  All share this opinion, and this was a factor in the decision to move to the island.

I have to be very careful about what I eat.  I have to stay way from anything containing gluten, and also any food additives are bad news.  So when I eat out it’s usually a case of meat or fish, fresh veg and chips with no sauces, unless I know that the chef.  On our last trip to Alonissos, we ended up at a local taverna and I chose the souvlaki which turned out to be ‘pure’ meat sausage rather than the more traditional pieces on meat on a skewer.  I didn’t make a fuss because I am friends with the owner, but I guess that it contained wheat and/or additives because I started to suffer from really bad guts with muscle cramps in my back legs and arms the following day – enough to cause quite a few sleepless nights because of the muscle pain and eventually bleeding in my motions.  It took me over a week to get over it.  This was the result of one meal.

From what I understand whilst many ‘recover’ from CFS, the ones that do tend to be under 30; few in later life do, so I think that I have been fortunate.  Some months ago, the ME Association published the results of a survey of over 4,000 ME/CFS sufferers, Managing my ME.  It’s very informative, but quite a heavy read of 32 pages of tables and results.  Cort Johnson, the webmaster of the US Phoenix Rising – About ME/CFS website gave a reasonable summary in his blog post, Bringing the Heat: An ME/CFS Blog – Treatment the UK way.  My sound-bite summary is in two main observations:

So my recommendation to any fellow suffer is:

  1. Don’t place any hope in the recommendations or the main treatments offered by the NHS currently, as these have proved overall to be worse than useless.

  2. There is a lot of useful experience and advice out there.  Research it and keep an open mind about what might work for you.  If you don’t seek, then you won’t find; if you don’t try then you won’t discover.

I don’t believe that CBT will always cause harm.  Clearly psychotherapeutic techniques can help some patients with CFS and other debilitating illnesses, and at its most basic positive thinking is always a factor in outcomes.  I do believe that most CFS patients are of sound mind but often just totally pissed-off with the pain, lack of mobility, etc. which is a result of their CFS, and not a causal factor.  This is very different to clinical depression.  However, GET is a more dangerous treatment in my opinion, because if applied incorrectly or in the wrong context then it can truly cause harm to the patient.  It takes a far too simplistic “open-loop” view to illness management.  I use a form of pacing, but I always need to me aware of my limits and even then I get it wrong sometimes.

So what seems to work for me:

What continues to sadden me is the attitude of the NHS.  I realise that many GPs, including mine, are supportive and sympathetic. However, they have to work within a framework of guidelines, and it is these and the system that created them that are failing this patient community.  CBT and GET continue to be the main planks of recommended treatment despite the lack of efficacy from NHS funded reviews, and the overwhelming body of negative feedback from patients.  Nearly all research and clinical funding goes into such psychotherapeutic techniques, and none into biological aspects or possible avenues to pharmacological treatments.  The GMC has recently suspended one of the few doctors in the UK who is willing to flout this implicit embargo on offering constructive advice to CFS sufferers on the basis of very questionable ‘evidence’.  I despair.