Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

A couple of general points

*It's good to see Karl Morten at Oxford & Julia Newton's teams in Newcastle have been working together for some time now.

*Although it looks like he was wrong on this, Norman Booth did an immense amount of good for ME patients in the Oxford area. He was a stalwart of the Oxford ME group OMEGA. He is greatly missed.

*Agree with comments above about Sarah Myhill. Not someone who I'd recommend to patients. Ill people are desperate for help but a good health professional shouldn't sell tests and supplements which have no evidence of viability. I know one person who has been told they have a "mitochondrial defect" via the Myhill test.

 

It should be shocking that it would take this long to check on this test. Great to see this research, as everyone has said.

 

We did the ATP profiles test.
It correlated spookily precisely with functional ability at the time.

I haven't read the paper yet - too late now- but the test also looked at other cofactor levels - carnitine/ glutathione,/ niacin / sodase .

The issue with chucking a whole lot of supplements at people is that a one size fits all doesn't work. Supplements also have an order of introduction to have efficacy, and some need others for absorption. There are supplements some people cannot handle at all . It's a lot more complex than a handful of pills. Sadly.

 

If one considers supplements as pharmaceuticals, then it would be expected that treatment regimens be formally tried in the form of a clinical trials. This has not been done. The thing about supplements is that they are available over the counter. Sometimes the doctor sells them from their office, which in itself presents an ethical issue. Sometimes a physician promote their treatment regimen via social media or by selling a book (which does not require peer review) There is a market for desperate people. All they need is a ‘doctor’ to trust, and money. A lot of money.

 

Initial response from Dr Myhill, posted in the Dr Myhill protocol Facebook group. Shared with permission.

 

Well, I'm unimpressed by that response. If the test is not diagnostic, why the hell is it being done? And she seems to be trying to suggest that the authors ran a different test than the one she uses, which I highly doubt. And finally what seems to be a refusal to defend the protocol further seems to me a concession that it is indefensible.

 

She did say that she is working on a more in depth response.

 

I can’t see how the problems with storage and sample time could account for the strong correlation between the degree of mitochondrial dysfunction and illness severity. I only quickly scanned the new paper so I might have missed something but I didn’t see that they have addressed this point. So I guess that remains a bit of a mystery...

 

Tests can be run even though they are not necessarily diagnostic for any particular disease, even most routine blood tests like the CBC don't directly serve as a diagnostic marker for any disease.

 

that's what i'm getting at. i don't see how you would end up at this result!

 

The following is an extract from Dr Myhill’s book “Diagnosis and Treatment of Chronic Fatigue Syndrome” (page 44):

(My bolding)

So I don’t think Dr Myhill’s statement that “the test was never marketed as a diagnostic test for CFS/ME” is entirely accurate...

 

By the way, I am not a fan or a follower of Dr Myhill (although I do use one product from her shop, which helps me a lot). I am just in the facebook group in order to see what they're saying about things.

 

This looks to be a good quality study at first glance, there didn't seem to be any compelling group-wise differences between patients and controls.

Looks like another unnecessary test, hopefully this will save some patients some money...

 

That in itself will be a good insight into their mindset and approach toward good scientific process.

 

Well to be fair, there's a difference between saying that something "can" be used to make a diagnosis, and *marketing* something as a diagnostic test.

 

I do think people have rather jumped the gun
for interest ACKNOWLEDGEMENTS MEA (not a great ME advocate but better than- Afme (supported PACE & controversial NICE Guidelines) & MRC - Medical Research Council - see Simon Wessely - "Wessely was a member of the scientific advisory board between 2002-2012. Funders that Wessely has professional links to include The Wellcome Trust, MRC, King’s College London, ESRC, Mental Health Foundation and the Mental Health Research Network."

 

Hahaha, you are suggesting Karl Morten and Julia Newton are tools of the MRC and/or Wessely to discredit Myhill. Best laugh I've had all day, thanks.

 

Good to see a replication study even (especially?) when it doesn't replicate. The ME/CFS field is littered with contradictory, unreplicated findings and we need studies like this to trim the various results down to those that can be shown to be rigorous. As for the Myhill group, I have always been wary and remain so.

 

https://www.meassociation.org.uk/20...not-be-used-as-test-in-me-cfs-09-august-2019/