• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Do you have muscle weakness? I think I have found a potential ME/CFS subset

ChookityPop

Senior Member
Messages
583
I have now tested positive for CN-1a which is mainly seen in Inclusion body myositis (IBM) patients over the age of 50 but also in other autoimmune diseases like LUPUS, Sjogrens and more. Due to the age of IBM onset this antibody is likely to be tested less frequently in younger patients.

I tested cN1A (Mup44), IgG at Synlab in Germany. Its a low cost antibody test for around 30 euros


I have now found quite a few ME/CFS patients with this antibody and they don't seem to have the typical IBM symptoms. For example I have full body muscle weakness which is not def not common in IBM at least not my level of weakness. But I have also found a case study of an IBM patient with only weakness of the calf and thighs so there seems to be a wide range of presentation and perhaps different subsets that the litterature havent caught up to yet. https://academic.oup.com/labmed/article/41/7/393/2657555


There also seem to be quite a number of vax injured people positive for this antibody with muscle weakness.

This makes me think there is a subset of ME/CFS, LC and vaccine injured that are positive for this antibody and it likely contributes to their ailments. I would love to see the frequency of this antibody in ME/CFS, LC and vaccine injured.

There are ongoing trials with ABC008 which shows promise in stopping progression in muscle weakness. https://abcuro.com/uncategorized/ab...for-the-treatment-of-inclusion-body-myositis/

EDIT: Let me add that my disease is VERY different to the standard IBM patient. Whats interesting is that if they exert over their limit they often get permanent worsening.
 
Last edited:

hapl808

Senior Member
Messages
2,003
Interesting. I was examined once for myositis, but I think it was mostly MRI and not antibody testing. Don't think they found evidence of it, but I also have pretty severe full body weakness, easily injured, etc - along with the more typical ME/CFS crashes from physical or mental exertion, etc.
 

Wishful

Senior Member
Messages
5,639
Location
Alberta
It would be helpful to identify common comorbidities. Then those patients can get diagnoses, and hopefully treatments for those. It would also reduce research funding wasted on theories based on comorbid symptoms.
 

ChookityPop

Senior Member
Messages
583
Interesting. I was examined once for myositis, but I think it was mostly MRI and not antibody testing. Don't think they found evidence of it, but I also have pretty severe full body weakness, easily injured, etc - along with the more typical ME/CFS crashes from physical or mental exertion, etc.
My MRI dont show anything either and you can have a normal biopsy as well. I have full body weakness as well which is not the common presentation at all for IBM. Do you have opportunity to test CN-1a?
 

hapl808

Senior Member
Messages
2,003
My MRI dont show anything either and you can have a normal biopsy as well. I have full body weakness as well which is not the common presentation at all for IBM. Do you have opportunity to test CN-1a?

I declined the biopsy as I was extremely sensitive to testing and I felt they didn't actually expect to find anything actionable.

I don't think I can test at the moment. Been hovering between housebound and bedbound mostly - and huge QoL difference between the two, so I really try to stay on housebound side. Any blood work crashes me badly and I don't always seem to recover to baseline, so it would have to be something very actionable and potentially very helpful for me to risk it at the moment.

Are there any effective treatments for IBM?
 

ChookityPop

Senior Member
Messages
583
I declined the biopsy as I was extremely sensitive to testing and I felt they didn't actually expect to find anything actionable.

I don't think I can test at the moment. Been hovering between housebound and bedbound mostly - and huge QoL difference between the two, so I really try to stay on housebound side. Any blood work crashes me badly and I don't always seem to recover to baseline, so it would have to be something very actionable and potentially very helpful for me to risk it at the moment.

Are there any effective treatments for IBM?
There is no treatment atm for IBM unfortunately. There is an ongoing trial with ABC008 which seems to stop progression of muscle weakness.
 

hapl808

Senior Member
Messages
2,003
There is no treatment atm for IBM unfortunately. There is an ongoing trial with ABC008 which seems to stop progression of muscle weakness.

For me, that can rule out certain testing. If the illness is definitive and the tests are easy, I might still pursue it. But if the diagnosis is sometimes vague, and any risk to my health in testing - then I likely won't pursue if it's not treatable even with a positive result. I know some may feel differently, but I've always emphasized my interest is in feeling better to whatever degree possible - not in the diagnosis itself.
 

Zebra

Senior Member
Messages
846
Location
Northern California
Hi, @ChookityPop

My mind isn't working so well right now, but I think I saw another post about your antibody positivity in which you mentioned muscle biopsy results were pending.

Have you received those results yet?

Best wishes to you!
 

ChookityPop

Senior Member
Messages
583
Interesting. I was examined once for myositis, but I think it was mostly MRI and not antibody testing. Don't think they found evidence of it, but I also have pretty severe full body weakness, easily injured, etc - along with the more typical ME/CFS crashes from physical or mental exertion, etc.
I also had a MRI which showed tiny tiny bit of inflammation. I have yet to receive the reports but Im pretty sure the MRI dont show myositis. The same happened to the ME/CFS woman I know with CN-1a, they said it was not of relevance. But I am certain this antibody is relevant and contributes to my symptoms
 
Last edited:

ChookityPop

Senior Member
Messages
583
Hi, @ChookityPop

My mind isn't working so well right now, but I think I saw another post about your antibody positivity in which you mentioned muscle biopsy results were pending.

Have you received those results yet?

Best wishes to you!
I will update when I get the results. Any day now. Thank you!
 

ChookityPop

Senior Member
Messages
583
It would be helpful to identify common comorbidities. Then those patients can get diagnoses, and hopefully treatments for those. It would also reduce research funding wasted on theories based on comorbid symptoms.
100%. I have now seen a couple LC patients with severe muscle weakness testing positive for CN1a. Would be incredibly interesting to see How many ME/CFS and LC patients testa positive for CN1a.
 

ChookityPop

Senior Member
Messages
583
Hi, @ChookityPop

My mind isn't working so well right now, but I think I saw another post about your antibody positivity in which you mentioned muscle biopsy results were pending.

Have you received those results yet?

Best wishes to you!
This is my muscle biopsy result.

M. vastus lat. biopsy, isopentane nitrogen freezing.
HE preparation shows a moderate degree of fibre diameter change. Fibre size 20-70 microns.
Moderately atrophic, rounded fibres are scattered, hypertrophic fibres are not visible. Atrophy
factor (1)=100, (2)=360, hypertrophy factor (1)=0, (2)=0. Fibre splitting, regenerated fibre not
visible. Scattered non-necrotic fibres infiltrated by mononuclear cells one/fascicle occur. The
percentage of inner nuclei is increased (4-5%). Moderate connective tissue proliferation is
seen perimysially. No perifascicular atrophy. Endomysially, discrete mononuclear infiltration
is seen around 2 fibres.

Modified Gömöri staining for ragged red fibre (RRF) not visible. Nemaline body, spheroid
body, rimmed vacuoles, tubular aggregates absent. Peripheral nerve not visible.
No fatty accumulation in fibres by oil-red staining.
No glycogen accumulation seen in PAS preparation.
On NADH-Tr staining the intermyofibrillar network is generally normal in appearance.
With SDH, fragmented fibres, SSVs (strong SDH reactive blood vessels) are not seen.
In SDH-COX preparation normal cytochrome c oxidase (COX) enzyme activity is seen.
Acid phosphatase sample shows no necrosis, but some monocyte-macrophages around muscle
fibres in 2 areas.


Fibres regenerated with alkaline phosphatase are not visible.
In APT-aze preparations, the mosaic structure of fasciculi is retained, with signs of fibre II
predominance. Fibres I: 29%, II/A: 70%, II/B: 1%. No fibre type grouping.
Immunohistochemistry: no cells of CD3, CD4, CD8, CD68 markers, no complement
deposition. (C5b9). HLA-DR is positive on some muscle fibres, HLA-ABC shows weak
positivity on the muscle fibre surface.


Pathological abnormalities:
1. Moderate fibre size variation
2. Increased percentage of inner nuclei
3. infiltrated, non-necrotic fibres
4. endomysial mononuclear infiltration
5. Connective tissue proliferation.

Conclusion: The sample shows moderate myopathic abnormalities. Although discrete,
circumscribed endomysial mononuclear cell proliferation is present, myositis is not
confirmed.
 

Zebra

Senior Member
Messages
846
Location
Northern California
Hi @ChookityPop

First, thank you so much for sharing! That is very generous of you.

Second, that is the most thorough and exhaustive muscle pathology report I have ever seen. Wow!

When you are ready, and if you feel comfortable doing so, would you mind keeping us posted on your continued work up?

You've got 5 objective muscle pathologies that cannot be dismissed or ignored, so I am really hoping that your medical team homes in on a diagnosis and appropriate treatment.

Best wishes to you!
Z
 

ChookityPop

Senior Member
Messages
583
Hi @ChookityPop

First, thank you so much for sharing! That is very generous of you.

Second, that is the most thorough and exhaustive muscle pathology report I have ever seen. Wow!

When you are ready, and if you feel comfortable doing so, would you mind keeping us posted on your continued work up?

You've got 5 objective muscle pathologies that cannot be dismissed or ignored, so I am really hoping that your medical team homes in on a diagnosis and appropriate treatment.

Best wishes to you!
Z
Thank you!

I will keep you guys updated on everything. It will be very interesting to see what happens next!

Best wishes to you as well!
 

SlamDancin

Senior Member
Messages
509
Now I’m tempted to seek a test like this. Not only
do I have muscle weakness but I have very clear muscle atrophy and Myofascial trigger points all over my body. My muscles are all warped to some degree and it’s taken years of PT exercises to start to overcome. Not sure if it’s the root cause of all my symptoms but it’s clearly not just from being sedentary