I'm also a bit late, but since this issue has come up on the mailbase,
I'd like to make two further points:

1) The laboratory mentioned ("Methods" "Participants") did not do the
tests for the study as is stated in the paper,
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/?tool=pubmed#ap2

2) It beggars belief that somebody thinks you can do experiments which
require a functional Krebs cycle on cells isolated from blood samples
which have been sent through the Royal Mail.

I'm sorry Tim Reynolds, but this one is a scam.

Nick Miller
London

2009/12/23 Brian Payne <[log in to unmask]>:
> An excellent letter, Alison. I'm a bit late, but those interested might like
> to look at the scientific evidence in a paper indexed by Pub Med Chronic
> fatigue syndrome and mitochondrial dysfunction published in the new
> peer-reviewed online-only journal International Journal of Clinical and
> Experimental Medicine earlier this year.
>
> It is only about diagnosis and not treatment, but shows test results that
> differ significantly between patients and controls. The abstract says 'The
> “ATP profile” test is a powerful diagnostic tool and can differentiate
> patients who have fatigue and other symptoms as a result of energy wastage
> by stress and psychological factors from those who have insufficient energy
> due to cellular respiration dysfunction'. However, the controls were healthy
> normals, not patients with fatigue, and to obtain details of the methods one
> is invited to email the principal author.
>
> I'll stop now!
>
> Brian Payne
>
> Jones Alison wrote:
>
> Thank you to everyone who has contributed to this posting.  As I expected,
> this sort of private testing elicited an almost immediate shout of
> 'quackery' from our more vocal mailbase members.  Having read all of your
> varied comments, I managed to put together some sort of reply to my confused
> GP.  See below:
>
>
> As I suggested on the telephone this morning, by far the quickest way to get
> a range of views on this sort of topic is to post a query on the clinical
> biochemistry mailbase! I asked about some of the more esoteric tests such as
> the lymphocyte sensitivity test, the DNA adducts and cardiolipin studies.
>
> As I expected, the immediate response was a flood of replies stating what a
> load of nonsense it all sounds. However, when I sent another posting asking
> for any evidence in support of the sort of tests being requested, the
> general consensus is still that it's all probably a waste of time and money.
> If you want something hard and fast to refer to, I also attach a link to the
> NICE guidelines for ME / CFS. It says:
>
> The following tests should usually be done: urinalysis for protein, blood
> and glucose, full blood count, urea and electrolytes, liver function,
> thyroid function, erythrocyte sedimentation rate or plasma viscosity,
> C-reactive protein, random blood glucose, serum creatinine, screening blood
> tests for gluten sensitivity, serum calcium, creatine kinase, assessment of
> serum ferritin levels (children and young people only).
>
> Clinical judgement should be used when deciding on additional investigations
> to exclude other diagnoses.
>
> So there probably is a role for some of the investigations that have been
> performed. It seems there is less evidence available for the more weird and
> wonderful ones though.
>
> <http://guidance.nice.org.uk/CG53/Guidance/pdf/English>
>
> So my advice is that there is very little scientific evidence available to
> support the sort of tests that have been performed, beyond those recommended
> by NICE (which, by definition, must have some evidence base). However, all
> scientific research must start somewhere and I wouldn't like to say there is
> no merit in the tests performed, only that there doesn't appear to be much
> evidence available for their utility.  However, as it is so difficult to
> make a definitive diagnosis of ME, many patients are frustrated by the
> perceived lack of support from conventional medicine and seem to be willing
> to pay out large amounts of money to organisations that appear to take them
> more seriously. I don't know what other pathways your patient has exhausted
> - a number of people replied to me with details of the National CFS
> Diagnostic and Specialist Rehabilitation Service, which is based in an NHS
> Hospital and therefore should be accredited (and therefore monitored) in
> what it does. Perhaps you or your patient might consider getting in touch
> with them.
>
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