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ME1 Category of ME/CFS

Strawberry

Senior Member
Messages
2,079
Location
Seattle, WA USA
@Jonathan Edwards I read in this thread this morning: http://forums.phoenixrising.me/index.php?threads/do-mes-cause-cfs.31930/

You stated somewhere that rituximab didn't work with those with ME1 with ANA speckled pattern? Is there something that does possibly work? Or at least, is it known why rituximab doesn't work for that group of people?

For those not wanting to read his full introduction in that other thread, ME1 is this:

1. ME1 is due to antibodies to certain nuclear proteins that can enter cells and disturb function on a body-wide basis. ANA is positive and usually speckled in pattern. (The proteins are likely to come under what are called ENA antigens, which are not always strictly nuclear but no matter.) The fatigue of ME1 is basically the same as in primary Sjögren’s syndrome and other ANA-linked illnesses that have names. I have met many people in this group. Some might suggest that they are well enough described to take them out of the ‘unknown causes’ that are MEs but a lot of these people end up labelled as ‘CFS with an ANA’. The fatigue may be a bit different from other groups.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
@Jonathan Edwards I read in this thread this morning: http://forums.phoenixrising.me/index.php?threads/do-mes-cause-cfs.31930/

You stated somewhere that rituximab didn't work with those with ME1 with ANA speckled pattern? Is there something that does possibly work? Or at least, is it known why rituximab doesn't work for that group of people?

For those not wanting to read his full introduction in that other thread, ME1 is this:

I am not sure that I said that rituximab did not work for such people - it has not been tried as far as I know. However, rituximab seems to have rather little impact on speckled ANA autoantibodies - we think that this may be because they are made by very long lived plasma cells. So if a form of ME is caused by such antibodies it may not respond well. Remember that these categories are suggestions rather than anything proven.
 

Strawberry

Senior Member
Messages
2,079
Location
Seattle, WA USA
I am not sure that I said that rituximab did not work for such people - it has not been tried as far as I know. However, rituximab seems to have rather little impact on speckled ANA autoantibodies - we think that this may be because they are made by very long lived plasma cells. So if a form of ME is caused by such antibodies it may not respond well. Remember that these categories are suggestions rather than anything proven.

Is ANA (speckled pattern) really of any concern? I have no idea if it has anything to do with my health issues or not...
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Is ANA (speckled pattern) really of any concern? I have no idea if it has anything to do with my health issues or not...

Lots of people have speckled ANA antibodies without being unwell so al most certainly the antibodies are sometimes of no importance - just like for anti-thyroid antibodies or in fact rheumatoid factors.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
What are some more examples of diseases that might be caused by speckled ANA autoanitbodies or these plasma cells that make them? Do they have any treatment strategies? Is it something someone could study for ME1?

However, rituximab seems to have rather little impact on speckled ANA autoantibodies - we think that this may be because they are made by very long lived plasma cells
 

Strawberry

Senior Member
Messages
2,079
Location
Seattle, WA USA
Willow, this is what they know speckled pattern ls linked to:
Speckled—associated with SLE, Sjögren syndrome, scleroderma, polymyositis, rheumatoid arthritis, and mixed connective tissue disease
(stolen from here: https://labtestsonline.org/understanding/analytes/ana/tab/test/)

I luckily (or not so lucky?) don't have connective tissue issues, but it leaves me in the dark why I have the markers. I'd love to see someone study the link, but what is the percentage of CFS with ANA? It might be a smaller and less important group, considering if I remember right Dr Edwards said in his theory that ME1 is no sudden onset, slow spiral, and usually not as severe as other forms. But that thread is quite the chore to filter through to verify that! :D