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. :(
 
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.
 
Amw66 said:
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
Click to expand...
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.
 
Last edited:
Initial response from Dr Myhill, posted in the Dr Myhill protocol Facebook group. Shared with permission.


Screenshot_2019-08-08-16-41-30.png
Screenshot_2019-08-08-16-41-35.png


screenshot_2019-08-08-16-41-30-png.7966
screenshot_2019-08-08-16-41-35-png.7967
 
Last edited by a moderator:
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.
 
Andy said:
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.
Click to expand...
She did say that she is working on a more in depth response.
 
InitialConditions said:
this is the original paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/

Could problems with storage and sample time really account for the original results, which show clear demarcation between HC and PWME, and also strong correlation between degree of disfunction and illness severity?
Click to expand...

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...
 
Andy said:
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.
Click to expand...

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.
 
Snowflake said:
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...
Click to expand...

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):

There is now good evidence that the basic pathophysiological defect in CFS is slow recycling of ATP and this elegantly explains the symptoms of CFS. The ATP profiles test can therefore be used to make the diagnosis of CFS, to assess the level of disability objectively, to identify where the biochemical lesion lies and give pointers as to how to further elucidate and correct that biochemical lesion.
Click to expand...

(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...
 
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...
 
Surely the accurate thing to say about what happened would be they were confident it was helpful for diagnosis, their own research backed this up. Then the right thing to say for the future would be but as that hasn’t been replicated it won’t be used diagnostically in future. Maybe they can look again and do another study that tries to address issues highlighted in the new paper. Of course they have to be open to the possibility that the thing really doesn’t work.
 
Snowflake said:
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...
Click to expand...
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."
 
Last edited by a moderator:
Tiabuf said:
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."
Click to expand...
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.
 
In addition to the following report on this week’s failed attempt to replicate the commercial mitochondria test, we have comments below from Dr Charles Shepherd and the lead researchers, Prof. Julia Newton and Dr Cara Tomas of Newcastle University.

The long-awaited first independent assessment of Dr Myhill’s mitochondrial function test was published on Wednesday in Scientific Reports – an online, open access journal from the publishers of Nature.

The study was a joint effort by leading scientists in the field of ME/CFS from Oxford and Newcastle Universities; Dr. Cara Tomas, Dr. Tiffany Lodge, Dr. Michelle Potter, Dr Joanna Elson, Prof. Julia Newton and Dr. Karl Morten.

The study, funded by the ME Association’s Ramsay Research Fund, concluded that the mitochondrial energy score (MES) protocol is unreliable:
Click to expand...
https://www.meassociation.org.uk/20...not-be-used-as-test-in-me-cfs-09-august-2019/
 
You must log in or register to reply here.
Back
Top Bottom