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

I am unimpressed that the Opathy Association funds and Julia Newton carries out studies into 'CFS/ME', an entity which lacks defintion or ICD classification.

 

It's also possible the journal insisted on this wording. The MEA, at least, uses ME/CFS quite consistently, except where quoting NICE guidelines.

 

and funding research.

 

I'm waiting for confirmation but I would be hugely surprised if this wasn't solely down to Julia Newton's seeming preference for CFS/ME over anything else.

 

I fear you may be right. If so, why would the Opathy Association fund her research?

 

If you look in the name bar on the MEA web site you will see 'Myalgic Encephalopathy Association'. None of us has 'Myalgic Encephalopathy' as it has no definition or classification.

 

I think the ME Association once suggested to use the term Myalgic Encephalomyelopathy instead of Myalgic Encephalomyelitis because the evidence for inflammation is uncertain. They helped fund this study, so I'm guessing that Opathy Association refers to them.

 

Her use of a term that I, and many others, dislike doesn't necessarily mean her work on this paper is without merit. I also have faith in the standard of work done by the other named authors. If you have doubts about the conclusions of this paper please explain what you think they should have done differently.

From an article from 2010

https://www.meassociation.org.uk/20...yalgic-encephalopathy-on-the-new-mea-website/

it seems a fair point to me.

 

Multiple names and definitions have contributed to the mess we are in. Why add another when your object is to help patients?

Charles Shepherd says above, "I do not believe that there is any robust research evidence, at present, to confirm the use of the term encephalomyelitis - inferring significant and active inflammation involving the brain and spinal cord...."

There is the evidence from autopsies of eg Sophia Mirza.

 

There is lack of congruence between the stated use of the CCC which define 'ME/CFS', and the paper's use of the term 'CFS/ME'. Thinking as muddled as that on basic terminology does not give confidence in the rest of the paper, plus adds more confusion to the literature.

 

There is a response from Myhill and edit [McLaren-Howard] on Myhill's site. I don't have the link this very minute.

 

https://www.drmyhill.co.uk/wiki/Res...vailable_laboratory_test'_by_Cara_Tomas_et_al

 

Booth is no longer alive. The response is from Myhill and McLaren-Howard.

 

Both my aunt and daughter had these tests.
The results both correlated to level of disability.
Findings re low glutathione, B3, sodases tie into other research.

Others whom I have known had the same experience which does suggest that further exploration may be warranted.

 

This, presumably, is Dr Myhill's clinic in Wales? So the blood samples would need to be sent by post, unless patients had the blood draw done separately at Biolab in London.

So, JMH was "blinded to the *Ability*" (a mutually agreed number on the Bell Ability Scale, between patient and SM), but, surely, if the samples have been obtained in different ways and at different times, some by himself and others by the private medical clinic, he would know what was what. This wasn't a blinded study.

Can we assume control subjects attended Biolab in London, in person? Or might they have sent samples by post?

Hmm, I'm not sure about this... Were is the information on storage time, for patient samples vs controls?

Just adding that info for completeness.

 

I dont think Canadian Consensus Criteria are reliable but I have had this test a few times and feel I ought to speak about my experience to provide information for others to consider even if it is just another anecdotal account.

The first thing I ought to do is declare my interest which is that I depend on Dr Myhill's diagnosis to provide medical evidence for benefits assessment i.e. PIP and ESA. I don't know of another doctor in the UK who will provide a diagnosis as evidence and back it up with written statements as she has done for me, for which I am grateful. Other doctors I saw before finding Dr Myhill, who had diagnosed aspects of my condition had turned me down flat when it came to providing evidence for benefits assessment. This is my financially and politically influenced medical reality and an example of how the medical establishment closes ranks against ME patients in the face of uncertainty, with the exception of a few brave souls like Dr Myhill who has paid a price for nonconformity. So in my view she is a hero even if the mito test is an uncertain quantity. What is science about if not investigating the uncertain?

I had these mitochondrial tests (ATP translocation) from Dr Myhill and Drs McLaren Howard which provided evidence at one point along with cell free DNA tests for benefits assessment. To be honest at the time they provided really good value for money as they meant I could win the "card game" with the DWP who have twice now tried to unfairly and improperly disallow my claim and drop me in the meat grinder of coerced activity, which would be very counterproductive for me indeed as I have the real deal with PEM which can get very nasty for me.

However to be honest, the mito tests while at first consistent, later provided conflicting results after I gave up eating nightshades (as they caused mouth ulcers) since the mito test normalised while the cell free DNA test improved but was still outside normal ranges. However my ME CFIDS did not improve, in particular, I still had recurring virus and PEM (post exertion malaise) but the neutrophil mito test did not show abnormality any more.

This might be related to the fact my virus attacks were cyclical and I was just catching the cycle at the wrong time with the blood test; but its also possible nightshade vegetables contain toxins which can interfere with mito function. These are solanines, which can interfere with mitochondrial membrane function by opening the inner mitochondrial membrane pore, decoupling the mitochondria, releasing calcium and inducing apoptosis (see previous posts for more discussion of this at https://boolyblog.blogspot.com/). Once I stopped eating nightshades the mito tests normalised and the constant mouth ulcers induced by eating nightshades stopped. I also needed a lot more calcium in my diet to prevent muscle pain but apoptosis remained abnormally high and my CFIDS with PEM continued.

Yet I did have empirical photographic evidence of ongoing CFIDS. Since for purposes of full disclosure and open discussion, I had felt I needed empirical evidence for my doctors (including Dr Myhill and my GP too) and assessors because I was used to facing disbelief and a "turn down culture" of the DWP despite continual raging CFIDS. All I could provide to back up the high cell free DNA test and claims of CFIDS was dated (via newspaper headers) photographic evidence of my recurring virus, which is HSV2 in the context of prior severe EBV, to show that it still recurred 30 years after infection, which historically coincided with ME onset plus neurological plus TH2 shift symptoms i.e. classic MEA type London criteria viral onset. The evidence unequivocally showed an abnormally high frequency of viral episodes (imaging 10 of 13p/a) demonstrating I still had immune dysfunction symptomatic of CFIDS.

My feeling is the mito function test did record something which was abnormal and related to CFIDS but not causal of CFIDS but possibly secondary to it and alleviated by a nightshade free diet.

My comment would be that we need a reliable test for ME CFIDS and CCC aside, for the reasons given above IMHO we don't have one.

 

Do we know if any patients have submitted samples for the Myhill test and they've come back as 'healthy'?