M.E. is not in my head – it’s in my cells!
Dr Myhill has published a paper with a study showing how mitochondrial disfunction relates directly to level of incapacity and illness in ME/CFS sufferers. In effect this could be a single blood test for diagnosing ME/CFS.
More research is needed to build on the findings of this small sample. What they haven’t established of course is whether this disfunction is primary to the conditions cause or a secondary feature. But it’s promising news all the same.
I’m eagerly awaiting the translation of this paper from all the science talk. Dr Myhill does this to a certain extent on her website talking about cars and batteries and giving some advice on treatment/good practice.
I’m no expert but what did excite me was this diagram from page 11 of the paper. In the first diagram, A, it shows subject’s CFS ability scale across the bottom and level of mitochondrial energy along the side. (The ability scale number was reached after other causes of patient’s symptoms had been explored and appropriate treatments had been tried).
Broadly speaking it looks to me like the more severe the ME/CFS the lower the mitochondrial energy score. And none of the control subjects had that same low level cell energy.
Now unless you have £249 to get the necessary blood test(s) done privately through Dr Myhill it’s unlikely you’ll be having this as a diagnostic tool in the near future. Let’s face it there’s loads of great research going on out there informing theories about this illness which are a long way from bringing solutions into our healthcare system.
But it’s refreshing to be offered yet more insights into the biomedical nature of ME/CFS.
Especially as the Judicial Review into NICE Guidelines on ME/CFS will be taking place in a few weeks time on 11 and 12 February 2009.
It is extraordinary that a set of clinical guidelines into a condition has not only been called “unfit for purpose” by leading ME groups, but that people with ME felt so outraged about the guidelines that they want them challenged in court. Such is the depth of feeling about the process used to determine these guidelines which offer CBT and GET as frontline “treatments” for the condition and disregarded the studies, papers and first hand expertise of specialists in biomedical research into ME/CFS.
You can, if you are well enough, attend the court and witness the review for yourself. This supporters site gives you all the information you need to attend on 11 and/or 12 February 209.
You may also be interested in:
- Video by supporter Ann Barclay (Jan 2009) explaining about the judicial review and how you can help
- ME Action’s site about the judicial review including papers about why it is needed. Prejudice-based Medicine? by Margaret Williams makes very interesting reading as it explains the make up of the advisory panel for the guidelines and who was excluded.
- Letter from The One Click Group‘s Jane Bryant last year after successfully raising £20,000 to take this to court. Updates and information from the group onthis judicial review is frustrastingly sparse (few resources and a big battle ahead I suspect!) and often hidden away in word or pdf documents so I suspect does not show up in web searches.
- ME Association response to NICE guidelines and explain why they are unfit for purpose