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

If I've understood........Dr Myhills test doesn't work.

full paper here
https://www.nature.com/articles/s41598-019-47966-z

 

Yeah, looks that way.

I thought the below comment was quite vocal.

"After a diagnosis of CFS/ME is made using the MES test, patients are subsequently sold supplements in order to treat their CFS/ME, despite there being no placebo-controlled trial to show their effectiveness. The first peer-reviewed publication regarding the MES test from the Myhill group came after they had already been using the test and supplement regime with CFS/ME patients despite there being no published evidence of the effectiveness, reliability, or reproducibility of the test."

 

Exactly. She's making a killing down at Myhill farm. The tests provided are extremely expensive, and the results looked so convinving in the paper she published. it seems this was all due to sampling time and storage?

 

It would have been better if this test worked, but it's also good to know it's not reliable.

 

I hadn't been quite aware how un-evidenced her test and treatments are.

 

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?

 

If I am reading the new paper correctly, the thing they claim to be measuring is almost unmeasurable given variation in sample times as may be found by patients samples at poorly controlled temperatures being shipped to them.
In addition, there are severe questions about what they are in fact measuring.

And there is not enough data in the original paper to rule out storage delays between HC and PWME being the whole of the difference.

 

Is it unusual for a failed replication study, in ME/CFS no less, to appear in Nature?

 

Wasn't Karl Mortens group looking at Graded Exercise too, is another paper expected?

 

They were/are analysing the samples from a Polish cohort that had gone through a course of Graded Exercise. As far as I know the plan is to publish the results of that but unfortunately I don't know when we might see it.

 

That's good to hear thanks @Andy

 

They do publish failed replication studies, not as often as you might like - but you can't make statistics from single events.

I would truly like to know the editorial process and reviewers on this, and hope no part of the decision was to bash a biomedical approach.

 

Myhill is dodgy. Any attempt she makes to insert herself into issues like PACE will just be harmful for advocacy efforts.

It's in 'scientific reports', so not Nature proper.

 

Scientific Reports is a Springer Nature journal, but it is a tier or two down from the big Nature journals. It is usually where papers rejected from the leading Nature lines end up. Still, a respected journal.

 

This strikes me as a big step forward for the field.

I remember reading the original paper and feeling that the results looked almost too good to be true. But the acid test is always a replication attempt, ideally by an independent group and that’s exactly what’s happened here.

An independent group is more likely to be alive to any issues of implementation, such as different processing times and temperatures between patients and controls, which appears to be the issue here.

Thanks to the ME Association for funding this work.

To be fair to the original authors, we should wait to see their response to this new paper. But it does very much look like their test is not reliable and so should no longer be sold to ME/CFS patients.

 

I agree. This is the sort of study we should be encouraging. It shows that there are people in biomedical ME research committed to getting reliable answers.

I found the original Myhill paper very hard to make sense of. It looked like a clear cut result but it was very unclear to me what it was measuring or why a result like that should explain symptoms. One of the problems of study peripheral blood cells is that by and large they are not doing anything. They are in transit to places where they might be active. In a disease situation the turnover is likely to change so interpretation is very hard. In all the disease I have worked on where white blood cells are heavily involved in tissue pathology you find nothing much in blood cells.

 

According to the PACE authors and their acolytes, since this trial did not show results that we should like (according to their model and claims of the past several decades anyway), we should be angry about it and harassing the researchers over it since they had the promise of showing results we should like and didn't.

Strange how that works out. They claim we are anti-science. I claim they are just bad at it and use it as a cover for promoting a belief system with zero consideration for the impact of their work in real life. Big difference.

Objective evidence or bust, whatever it shows. This is how science works. No moving goalposts, no hyping, no displeasure at null results, no fraud to turn negative results into claims of results so positive they amount to a complete cure if you believe in the treatment. Observe, hypothesize, falsify (or fail to). That's how it works and that's what we want.

 

I am glad this research was done although I share some confusion

I had this test many many years ago. It’s a shame it wasnt validated until now and probably a lot of patients money wasted. My results showed low ATP which now they’re saying was not reliable. I see dr M as arrogant on the fatigue issue but equally she was stabbing in the dark when there was no research to give anyone any other treatments and patients wanted to try anything . It was a reasonable hypothesis, we are still looking into atp today. Unfortunately her simple ideas for supplements didn’t fix the problems we are still trying to understand.

 

It seems Norman Booth, had similar concerns about the state of the Neutrophils which he discussed with John Mclaren Howard the one who came up with the test.
Source : https://forums.phoenixrising.me/threads/mitochondrial-and-energy-metabolism-dysfunction-in-me-cfs-—-myhill-booth-and-mclaren-howard-papers.47488/post-785000

It does seem today's paper uses sodium azide for 3 minutes which others studies trying to replicate did not.

Norman Booth was big on trying to get the work replicated to prove or disprove the test, and also bringing in Karl Morten. These are his own words.

Thank you Norman, rest in peace.

 

The authors write in the Acknowledgements section