PisForPerseverance
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Post here with
Let's keep it mostly information sharing so it's an accessible place people can find information. Of course talk about our symptoms but only with the stuff mentioned above. Link to individual posts with successful autoimmunity treatment stories and asking for help about our situations.
When sharing information, except when about our personal experience, please post a reference and a quote if applicable. If you can't, that's ok, but please pose it as a question to the tune of "I heard xyz and I can't find any information about it (or don't have the ability to look) and don't know if it's true or what it means. Can anyone find information on xyz?"
Having neurological autoimmunity does not negate ME. ME is a neuroimmune condition. Neurological autoimmunities are neuroimmune conditions. Many neuroimmune conditions and processes can occur at the same time. Different antibodies can contribute to the same symptoms as well. Inclusion and exclusion in the diagnosis of ME is a complicated issue. It seems there's a consensus moving to that there are different subsets of causes and contributing factors. But causes and contributing factors are not well understood yet. Autoimmune processes are proposed as causes and contributing factors.
If there is an autoimmune condition that explains your post exertional malaise exactly, and you treat it and it goes away, then you and your doctors can consider you as having had that autoimmune condition but not having had the group of symptoms called ME if you/they want to. But I think that would not be wise. And you don't have to agree with them. ME so far is still a group of symptoms with one hallmark symptom, so any causes and contributing factors that are found for individuals, it would be wise for us and researchers to still consider ourselves as having, or having had, ME. Otherwise as subsets of causes and contributing factors are found, how would we move our understanding forward if everyone who successfully treats the hallmark symptom is no longer considered to have had ME? This is my opinion and we can talk about what's best in terms of definitions for moving our disease understanding forward in another thread, and it gets talked about a lot.
Learning about all neurological autoimmunity to help ourselves is NOT about looking for the cause and treatment of our post exertional malaise specifically. But I wanted to state my understanding that one disease process existing in a person absolutely does not exclude other disease processes. And that multiple contributing factors to humans health and symptoms are being discovered all the time. Our bodies are insanely complex and there's more processes than we can ever hope to understand, I believe. I don't want misunderstanding about this to be a barrier to people investigating and treating autoimmunity.
Increasing our knowledge about autoimmune causes of neurological symptoms doesn't break down all the barriers to the care we need of course. But it is one step that can lead to many ways to break down barriers. If we understand more possible causes of our symptoms we can advocate for the care we need more, find more avenues for investigation and treatment (find or advocate to see new doctors, go to new clinics, reach out to researchers, get into trials), find new allies and avenues of help for breaking down barriers like educational, support, and advocacy organizations and individual allies, and move our choices. We as individuals still may not break down barriers in our own situations to investigation and treatment of autoimmune causes for our neurological symptoms, but at least arming ourselves with tools increases our chances of that, if not now then hopefully in the future.
From what I've learned on PR and my own research based on that, I've had life altering autoimmunity discoveries (hopefully in a good way). And I'm not done investigating at all. I'm so thankful and if sharing information and our stories can do that for me, it can help others just as profoundly.
- Antibodies that are believed or known to cause or contribute to any neurological condition or symptom (this includes motor, sensory, emotional, cognitive and conditions with a known neurological component) (with reference if possible)
- Ongoing research (share the significance here and make separate fuller thread about it and link to it here)
- Testing (with reference if possible)
- Treatment (with reference if possible)
- Educational, support, and advocacy organizations
- Doctors directories
- Graphics
- Pointing out a contradiction or confusion about the way something is treated or investigated in what were seeing in our reading and studies or in practice. Issues of there not being consensus. (With references if possible)
- What antibodies you have or had that are believed or known to cause or contribute to any neurological condition or symptom (this includes motor, sensory, emotional, cognitive).
- What conditions do you have that are associated with those antibodies? (Can put none, unclear, suspected)
- What investigation did you do that led to finding those antibodies or conditions? (Type of tests)
- Type of treatment (past or ongoing, can put none or not yet clear)
- Did you have any improvements? (Yes, no, unclear)
- Tips and advice from your experience on testing, treatment, self advocacy, navigating healthcare, overcoming barriers to autoimmunity treatment.
- Links to our threads about successful treatment stories of treating neurological symptoms from autoimmunity
- Links to our individual threads that ask questions and for help with our own personal situations with investigating autoimmunity for our symptoms and treating. So that people learning from this thread can help each other
Let's keep it mostly information sharing so it's an accessible place people can find information. Of course talk about our symptoms but only with the stuff mentioned above. Link to individual posts with successful autoimmunity treatment stories and asking for help about our situations.
When sharing information, except when about our personal experience, please post a reference and a quote if applicable. If you can't, that's ok, but please pose it as a question to the tune of "I heard xyz and I can't find any information about it (or don't have the ability to look) and don't know if it's true or what it means. Can anyone find information on xyz?"
Having neurological autoimmunity does not negate ME. ME is a neuroimmune condition. Neurological autoimmunities are neuroimmune conditions. Many neuroimmune conditions and processes can occur at the same time. Different antibodies can contribute to the same symptoms as well. Inclusion and exclusion in the diagnosis of ME is a complicated issue. It seems there's a consensus moving to that there are different subsets of causes and contributing factors. But causes and contributing factors are not well understood yet. Autoimmune processes are proposed as causes and contributing factors.
If there is an autoimmune condition that explains your post exertional malaise exactly, and you treat it and it goes away, then you and your doctors can consider you as having had that autoimmune condition but not having had the group of symptoms called ME if you/they want to. But I think that would not be wise. And you don't have to agree with them. ME so far is still a group of symptoms with one hallmark symptom, so any causes and contributing factors that are found for individuals, it would be wise for us and researchers to still consider ourselves as having, or having had, ME. Otherwise as subsets of causes and contributing factors are found, how would we move our understanding forward if everyone who successfully treats the hallmark symptom is no longer considered to have had ME? This is my opinion and we can talk about what's best in terms of definitions for moving our disease understanding forward in another thread, and it gets talked about a lot.
Learning about all neurological autoimmunity to help ourselves is NOT about looking for the cause and treatment of our post exertional malaise specifically. But I wanted to state my understanding that one disease process existing in a person absolutely does not exclude other disease processes. And that multiple contributing factors to humans health and symptoms are being discovered all the time. Our bodies are insanely complex and there's more processes than we can ever hope to understand, I believe. I don't want misunderstanding about this to be a barrier to people investigating and treating autoimmunity.
Increasing our knowledge about autoimmune causes of neurological symptoms doesn't break down all the barriers to the care we need of course. But it is one step that can lead to many ways to break down barriers. If we understand more possible causes of our symptoms we can advocate for the care we need more, find more avenues for investigation and treatment (find or advocate to see new doctors, go to new clinics, reach out to researchers, get into trials), find new allies and avenues of help for breaking down barriers like educational, support, and advocacy organizations and individual allies, and move our choices. We as individuals still may not break down barriers in our own situations to investigation and treatment of autoimmune causes for our neurological symptoms, but at least arming ourselves with tools increases our chances of that, if not now then hopefully in the future.
From what I've learned on PR and my own research based on that, I've had life altering autoimmunity discoveries (hopefully in a good way). And I'm not done investigating at all. I'm so thankful and if sharing information and our stories can do that for me, it can help others just as profoundly.
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