So. I haven’t posted since the appointment on Friday because I wanted to digest the information and present it as correctly as possible.
If you bear in mind that we first started visiting doctors in February about our girl’s fatigue and nausea, perhaps you can understand my interest in seeing the first doctor who has said, ‘this is what you need to do for her to improve.’ – since it is 6 months later. This is the doctor we saw on Friday, a clinical pharmacologist who I tracked down after thinking about Sue Jackson’s blog post .
This doctor is a big supporter of Graded Exercise Therapy (GET)… one of the treatments trialled and promoted in the PACE study published in The Lancet in March of this year. In summary, the study concludes that ‘Cognitive Behaviour Therapy and GET can safely be added to Specialist Medical Care to moderately improve outcomes for chronic fatigue syndrome’. Sadly only 60% of the studied cohort improved and the research findings have been subject to much criticism – as seems to always be the case when something is published about this condition. However the reality does seem to be that some people have really benefitted from GET and the study did show that adverse reactions to GET were very rare. The researchers argued that previous negative results from GET were probably due to too much exercise being done.
There IS research out there that says CFS is clearly different to deconditioning. It seems to directly contradict what GET proponents assert – that treating the deconditioning that comes with CFS is key. Or maybe not? Maybe improving fitness..if it can be done and is done very slowly and carefully…is helpful whatever the actual problem with CFS? Or perhaps it all comes back to the almost generally agreed thesis that there are subgroups within the CFS/CFIDS/ME classification? How are we supposed to untangle all this and ‘do no harm”? Good question. At the moment we have to go with the Lancet study as it shows very little adverse reaction to slow, careful exercise.
Sooooooooooo, we are still waiting to see anyone who can move us forward in a clinical setting but meanwhile we are going to start very gently with 2 minutes on an exercise bike each day this week, then if she doesn’t crash, amp it up by 10%. Very gently is the key phrase here. The theory made sense to us. The doctor stated that there is no doubt CFS is related to a blood pressure condition. Hearing our family history of tendency to faint and migraines that my mum and I share was enough for him not to hesitate that our girl would have blood pressure issues. (Didn’t test her though…interesting! Maybe didn’t want to make her feel more crappy) So maybe it IS all my fault after all!!! Obviously the doctor doesn’t know what changes the blood pressure ‘issues’ into CFS – the million dollar mystery – but he seemed strongly convinced of the benefits of GET overall. The scientist in our house assures me that in the biological sciences a 60% positive result on something – as shown in the Pace study – is very positive.
Unfortunately our girl was a little too interested in the exercise machines at the shop yesterday and though I shooed her off the bike after a minute or so she snuck in 5 minutes on a cross trainer while we were distracted and consequently feels rather dreadful today! Honestly. Do I have to watch a 12 year old every minute of the day??!!!
So she’s not at school and her little brother is in bed with a nasty cough that I am going to have to take to the doctor this afternoon due to the whooping cough incidents at the school… Ho hum. Another reason why school isn’t a great place for our girl to be right now. It is musical week though so there will be plenty of interaction with her peers this week. it will be interesting to see if she can push through as she intends. And if she does, how she copes with next week when I take her on a very special trip that was planned before we realised how sick she was. More about that in a later post!
Meanwhile the sun is shining here and the temperature is heading up to 20 celsius so despite the varied illnesses in the house….oh did I mention that Andrew is recovering from Opthalmic Shingles which we caught early thank goodness as it can cause blindness! – I’m a happy camper!
How’s life where you are? Enjoying the change in seasons? And, of course, any comments on GET and my conclusions welcomed.