Muscle biopsy report - any thoughts?

Hip said:
Myositis often involves a chronic infection with the same aberrant form of enterovirus (non-cytolytic enterovirus) found in ME/CFS patients' muscles. So it could be your ME/CFS and myositis are caused by this same virus.
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Do you have any citations handy on enteroviruses and myositis? Thanks.
 
Hutan said:
Although how many of us have ever had a muscle biopsy? Have there been many studies on this?
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That's a good question. There are so many tests that I have never had done but I did have a muscle biopsy pretty early in my illness (mid to late 1991, don't remember exact date).

The biospy of my right thigh (punch biopsy, I think?) showed some sort of minor abnormality. But it was one of those "a bit strange, not like other muscle biopsies, but not diagnostic" results that I got a lot during that time. Note: this is obviously my description, I don't remember exactly how the doctor described the issue. And it done was so long ago that I probably don't even have any of the records.

I also had a QEEG done, late 1990s sometime? That report I know I still have somewhere. I don't know how much evidence there is supporting QEEG tests for ME (or for other illness types). I do remember mine was deemed to be abnormal but don't remember how. I think the doctor had a lot more faith in QEEG tests than I did.
 
My muscle biopsy revealed:

Selective type II atrophy- this finding is consistent with inflammatory and malnutrition disorders, both of which seem possible processes in ME

Moderately reduced Glycogen levels- I have been researching what might cause this and there seem so many possibilities including energy metabolism problems reported in some recent research
 
Hip said:
As it happens I do:
https://www.ncbi.nlm.nih.gov/pubmed/2883345
https://www.ncbi.nlm.nih.gov/pubmed/2160802
https://www.ncbi.nlm.nih.gov/pubmed/10559326
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I think it is worth pointing out that the Dubowitz and Mowbray studies (the other is mouse) were done at a time when molecular biology was in its infancy and often produced false positives. This is more or less thirty years ago. In 1992 Paul Plotz from NIH published a larger series and found nothing. Hilton from the Frenchay Hospital confirmed that in 1994. They noted non-specific binding of probes to inflammatory cells, which might well explain the earlier findings. Nothing positive since has been reported as far as I know.
 
Hutan said:
Although how many of us have ever had a muscle biopsy?
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I would like to have a muscle biopsy and a detailed metabolomic check-up. But obviously, instantly burning muscles and very fast fatiguing muscles is not enough. I would consider doing it privately, but I don't know where. I understand muscle biopsies are hurtful and leave a small scar?
 
Inara said:
I would like to have a muscle biopsy and a detailed metabolomic check-up. But obviously, instantly burning muscles and very fast fatiguing muscles is not enough. I would consider doing it privately, but I don't know where. I understand muscle biopsies are hurtful and leave a small scar?
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Having worked in a muscle biopsy unit I can assure you that a lot of people find muscle biopsies very unpleasant indeed. And you have a scar. Processing and analysis of the samples is a highly skilled business so it should be done by a university research unit rather than a private lab. I would be cautious!
 
B_V said:
The reason I ended up with two muscle biopsies is probably rare and weird. I doubt many people get two. I decided to get one on my own, and it was an incision biopsy at Stanford. I had thought NIH would be able to use it, but they decided they needed to do on-the-spot processing that differed from how Stanford handled it. So I ended up getting a second (punch) biopsy at NIH three months later. Not how I would have chosen to do it starting out, but I guess it's good I ended up doing both.
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Thanks for that information. Don't feel under any pressure to respond. It can be aggravating to be questioned but a thought occurs.

There are variables falling into three categories- the site of the biopsies, the method of biopsy and the handling of the tissue. Was it ever decided with any degree of probability which was likely to have led to the differing results?
 
Jonathan Edwards said:
Having worked in a muscle biopsy unit I can assure you that a lot of people find muscle biopsies very unpleasant indeed. And you have a scar. Processing and analysis of the samples is a highly skilled business so it should be done by a university research unit rather than a private lab. I would be cautious!
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I am. Therefore I haven't had it done yet. Ideally it would be done during a research project, like the second biopsy by @B_V at NIH, although I'm not sure if NIH would fulfill the quality standards you maybe mean?

Still, I simply can't imagine everything's normal. I also admit I am curious from a scientific point of view.
 
chrisb said:
Thanks for that information. Don't feel under any pressure to respond. It can be aggravating to be questioned but a thought occurs.

There are variables falling into three categories- the site of the biopsies, the method of biopsy and the handling of the tissue. Was it ever decided with any degree of probability which was likely to have led to the differing results?
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Probably just the heterogeneous nature of many cases of myositis. Meaning the process won't be seen everywhere in muscle. The literature discusses the low "yield" of biopsies - meaning that they often look normal even if the person is experiencing suggestive symptoms. That's why MRIs are used to guide biopsy site selection. MRIs often show edema or fibrosis in affected areas.
 
Jonathan Edwards said:
In 1992 Paul Plotz from NIH published a larger series and found nothing. Hilton from the Frenchay Hospital confirmed that in 1994. They noted non-specific binding of probes to inflammatory cells, which might well explain the earlier findings. Nothing positive since has been reported as far as I know.
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Thanks, I was not aware that there were negative studies, nor the issue of non-specific binding. The Plotz 1992 study appears to be this one:
https://www.ncbi.nlm.nih.gov/pubmed/1349938

I also just found two further negative studies from 1993 and 1994:
https://ard.bmj.com/content/52/8/575
https://www.sciencedirect.com/science/article/pii/0022510X94902445

I can't seem to find any more recent positive studies, so perhaps those negative results are currently the last word.

However, I wonder if the PCR primers used in these negative studies might be an issue.

Since the landmark Chapman et al 2005 study on enterovirus in chronic myocarditis, it's known that the defective enteroviruses which cause persistent infections in myocarditis have small deletions in the 5′ end of their genome (ranging from 7 to 49 nucleotides in size).

Now I believe enterovirus PCR primers are usually designed to target the 5′ region because it's conserved; but since there are deletions in that region in persistent enterovirus, might it be possible that the primers in these negative studies were inadvertently targeting a deleted part of the genome, and thus got a (false) negative signal? I don't know enough about this subject to answer that.

But I know that Nora Chapman deliberately uses PCR primers to target the deleted part of the defective enterovirus genome, as a negative signal demonstrates the presence of enteroviruses with deletions.


I just spent the last two weeks researching and writing an article on MEpedia about these defective deleted enteroviruses, so it's all at the forefront of my mind at the moment.
 
@Jonathan Edwards, this above-cited 1994 paper actually says what I mentioned above:
The results of the present study do not support the hypothesis that persistent coxsackie or related EV infection is the cause of IMD, assuming that primer annealing sites of the 5′-untranslated region of the viral genome are not mutated or partially deleted in affected tissue.
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I know this post is not about muscle biopsy, but did someone here have an EMG? What were the results? My EMG showed "chronic neurogenic reorganization" (I hope this is correct English) with polyphases. (I was told this is irrelevant. But since the Neurologists I met never did a Romberg test with closed eyes and for 1 min., I don't trust that too much tbh.) Maybe other people with ME have that too? How would that fit into muscle biopsy findings?
 
@B_V

you have ptosis on the RIGHT eye
and inflammation only in one leg, the LEFT tigh ?

so, only the first (stanford) left leg biopsy showed inflammation ?
would have 1,000 questions, but what exactly were your eye problems when you saw the doctor and the ptosis was diagnosed ?

and what indentations in the skin you have, what do they look like and where are they ?

how did your medication/treatment change ?
 
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I had muscle biopsies approx 10 years ago (had been diagnosed for 18 years by this time). First was a needle biopsy, which showed abnormalities suggesting a glycogen storage disorder. Second full biopsy (other leg) to establish which GSD, apparently didn't show anything significant.

It was a very confusing experience, I never got any satisfactory answers to my questions about the results. I was originally referred to thoracic medicine with possible Pulmonary Fibrosis, which was ruled out by a CT scan - thankfully. Following this I had many other tests by both thoracic and neurology, I do wonder if the hospital would still have my results etc and whether I should request them.

ETA - the symptoms of GSD never seems to fit with my symptoms, particularly 2nd wind symptom.
 
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