Proof! It’s not in my head … it’s in my cells

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).

Chronic fatigue syndrome and mitochondrial dysfunction - diagram from page 11

Chronic fatigue syndrome and mitochondrial dysfunction - diagram from page 11

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.

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4 Responses to “Proof! It’s not in my head … it’s in my cells”

  1. 1 ashysheela January 22, 2009 at 7:54 pm

    hurray! more evidence for CFS/ME as a biological illness (like we didn’t know…) – let’s hope for not only a test, but also some treatments in the future…

    As for the NICE Guidelines, Prof Julia Newton, “my” POTS specialist has just been up to talk to Scottish Parliament as they are putting together their own version of the guidelines and are keen to include stuff on POTS and related symptoms, which would put more pressure on the English version to include them hopefully. I am putting together a blog after the lecture i went to on monday, but it may take a while!

    She did say that Newcastle was the(i think) leading place for mitochondrial dysfunction research in the UK too, which is interesting, as she is taking blood from all her CFS/ME patients i think (not sure if she took mine yet!) to add to a research bank.

    It is all so interesting and she seems to be working hard for us!

  2. 2 Cusp January 23, 2009 at 12:41 pm

    Yes, Dr Myhill is working hard for us and the POTS researcher. The problem is that even if you do fork out for Dr Myhill’s test and report — which I did in desperation last summer — it’s very difficult to do anything much with it unless you spend more money with her or can persuade your GP to ‘action’ her recommendations. My GP refused point blank (e.g. Vit B injections, etc etc). He said it wasn’t a question of budget implications for the practice (I asked him out right) but that he simply didn’t think that Dr M’s theories held water. Mind you, in 8 years + he’s done b***er al for me and neither have any of the other GPs I saw before diagnosis. Dr Myhill’s regime for recovery is also very rigorous, almost spartan.

    In the end I had to take on board what I could so I changed my diet (again !), eschewed 35 years worth of vegetarian principles, changed my supplements (again!) but couldn’t afford some of the other recommendations e.g. the Vit B injections — would have been free if GP had ‘colluded’ but he wouldn’t even if I gave them to myself so I’d have to pay. Dr M’s other recommendations are for going to bed at night v. early and getting up v. early — just not feasible in this house with children etc.

    In recent weeks a lot of my Orth.Intol. symptoms have reared their ugly heads and I’m at a loss stuck out here in East Anglia where ther are no real services and no support groups. It’s very nice to be in the countryside etc but the facilties and services are a dead loss.

  3. 3 ashysheela January 23, 2009 at 1:47 pm

    sorry to take over your thread rachel 😉

    sorry to hear your OI has flared up again cusp, hope it is just a temporary blip.

    It s so frustraing to be told what could help, and even beleive it is worth a try but not be able to access that treatment. it is like that with Dr myhill’s recommendations and i found it with the book “From Fatigued to Fantastic” which recommended all sorts of hormonal tests and supplements. What are we supposed to do? As for changing to non-veggie after so long, well i admire your courage to try that… i would find it very hard and ditressing after 22 years in my case.

    I also worry with the developement of tests that people who experience a severe illness will be told the tests say you are mild-moderate so you are not as severe as you say etc… which would effect benefits & treatment. There is so much going on with this illness i am not sure one test will make sense of the patient’s experience. It’s a step in the right direction, don’t get me wrong!

  4. 4 Shelli January 23, 2009 at 7:24 pm

    Thank you for sharing this information! It makes sense that the energy makers (mitochondria) are behind all this. As a ME/CFS newbie, it gives me hope that they’ll be able to figure this out and find a real treatment eventually. Doctors and governments can’t hide from science forever.

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