Monday 13 August 2012

News Flash!

I am sure many of you are aware of the report (link) which came out in the UK a couple of weeks ago about the different ME/CFS treatment options. I would like to comment on this in as frugal a way possible, but come from every angle too, so forgive me if this post is longer than my usual posts!
Its title is as follows:
Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis

So it is looking at four different treatment options, with a focus on specialist care and how each of them appear as a cost-effective way to treat ME.
The "long term" description is paramount here, looking at fatigue and physical activity improvement over one year. (in terms of ME, one year is on average short-term!)
It also takes into account the quality-adjusted life years. Cost-effectiveness looks at the different length of appointments taken with doctors and costed per hour, also price of any medication. Also taken into account is loss of gender and age specific man-hours at work or because of fatigue while at work and time taken by informal care from family, friends and volunteers- all of which is costed by the hour. Pensions or disability benefits paid were not added to the equation.

The conclusions were that CBT and GET were the best options using these criteria.

All treatment options will work for someone and if you are newly diagnosed, if these options are suggested for you I suggest you become aware of your needs and try them if advice is given in that direction. If you have to go to three, five, ten  different GPs to find someone who will recognise your illness and help you find solutions (this is true for any illness!) then do that. The doctor who has an understanding of your symptoms will guide you in better directions than the doctor who is disbelieving.

Charities and media have immediately jumped on the band wagon and started surveys of their own denying that these two treatment options will work for the majority. The difficult point here is that charities, websites and forums for ME tend to pick up the patients who have tried options, and not had much success, so are searching for new ideas, or are trying different options for a vigorous symptom before trying anything else (like I was with my seizures). Also patients who have been ill for many years, so the body has deteriorated more than it would have after just an initial crash, for these patients it is likely that more intricate or tailored treatment will be needed as secondary symptoms and illness might have taken hold. Charities will bring out surveys and have done in the past about how effective different treatments are compared to each other and it is more likely to hear from patients who have not had success than those who have and are out in the big wide world wanting to forget that part of their life!

Different stages of the illness need different options. For example when the first crash happens the last thing you need is increased activity week on week, restricted activity for as long as it takes is better encouraged here, even reduced activity and regular rest periods. (All these are examples of GET and with an experienced guide you will have the right options at the right times) But if this as addressed as continual rest with no activity and is continued for a year, like in the report's option of Specialist Medical Care (advice for coping and symptomatic pharmacology), then this may be too long. After as little as three months or as long as nine months, if the patient's needs are assessed and GET is then begun, the results might be much better. So two options within one year, for this patient, is much more effective than choosing between them. Once the year has gone by, maybe another 6 months of GET will be ideal, but you can't live your whole life by a stop watch, doing and resting for specific times, so awareness of the body is essential  (Adaptive Pacing) and realising what went wrong to put your body in this state in the first place- CBT might help here- could be the necessary catalyst to full recovery. All four options have been used in total, and adaptive pacing might be needed and utilised for a lifetime as it brings a much better awareness of the bodies needs.

We have to be aware as an ME community that all research is good research, but probably cost-effectiveness maybe not such a good criteria to add into the hypothesis!
ME comes in many guises. New research released in April of this year shows how breast cancer can now be  given 10 different diagnoses and 10 different treatment plans (link). ME research is currently concentrating more on the symptoms and individual parts of the body.
Holistic medicine has become the watch word of the medical community just like knitting has become the watch word of the craft world. When the body is looked at as a whole person, an individual, the resulting conclusions can be  much clearer.  WIth as in-depth an illness as ME we are nowhere near finding a single term for the illness. I believe this umbrella term might hang around for a while, but we are much more likely to have a different form of individually tailored healthcare  available to us soon as cellular level understanding improves. We have immune system, autonomic nervous system and mal-adaptive stress response dysfunctions, we don't have Myalgic Encephalomyelitis.

So they are my conclusions based on the bare facts of the study and my knowledge of the illness. Don't dismiss any research of ME without reading it yourself. You are the only one who can have your opinions! Lots of surveys of a similar nature have come out in the past and will continue to appear in the future. Remember too that red wine and chocolate should be consumed every day, or should they, what did the last survey say?! trust your instincts and make your own choices.

2 comments:

  1. I had GET treatment for a year. If I'm honest I didn't notice much improvement until I spent three months in a hot dry climate. However because that had helped me they linked it to the GET programme I was following and encouraged me to continue on my own. I tried to. I slowly increased the amount I did each day to the point that I could almost be seen as living a 'normal' life but 3 years later and my body has finally screamed out enough is enough. I've had a set back almost to the degree of the first crash. I agree with you that a year is not long enough to monitor the effects of the treatment. I had been following the book but it is very very difficult to notice a minor increase in pain and tiredness on a day to day basis, I thought I hadn't increased it but some days are worse than others anyway and you get used to a new level of pain really quickly. I am also now really skeptical about following this programme again. How do I know I won't have another major set back in 3or 4 years.

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    1. Hi Abzi, yes the idea of following rules rather than what your body is telling you is a difficult thing. I've had numerous crashes over the years for various reasons. I'm learning that the best way for me now is to listen to my body more on a day to day basis and follow what it tells me rather than what a tick chart or any treatment rule might say. As I follow this more aware way of living I'm still having good and bad days but I don't see them in the same way. Have you read Alex Howard's book, Why ME? . He talks about how he recovered without these more regulated options. It really helped me see that recovery was an option and that I didn't have to follow what my GP was suggesting. Best wishes, keep in touch, Hannah

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