Thread by @DovZeller

We don't know the full story of the connections between CCI, EDS, other connective tissue disorders, MCAS, infectious diseases, and ME.

I find it really worrying that people feel the need to assert that their ME is "real" ME and people with EDS and/or CCI have "fake" ME

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Anyone who asserts that the voices of people with CCI or EDS should somehow be cut from the story of "actual ME" is in my understanding using bullying tactics to exclude and silence people whose stories matter and are an important part of the larger story of ME.

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For so many reasons.
1) ME literally means brain inflammation and pain. It is quite possible that people who present as having ME, regardless of the etiology of their illness, have similar patterns of brain inflammation and pain.

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If we are using ME as a name, then it is quite possible we should be including anyone who has ME. Brain inflammation and pain that fits the pattern that we have come to call ME. As the etiologies are still not fully understood, there is nothing that necessitates

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insisting people who have CCI and/or EDS don't have ME.

Maybe some day there will be distinctions between different kinds of ME, or we will call illnesses that present as ME but have distinct etiologies different things.

We're not there yet.

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And even if we were, it is still important when telling any larger cultural and historical ME story to include people with CCI and EDS in the story and as participants in any conversation about the history of ME. Because they are and will always be a part of this history.

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We now understand that a lot of people diagnosed with ME or presenting as having ME may have CCI and/or connective tissue disorders.

That's all we know and understand.

That doesn't invalidate their voices and their stories as belonging to ME community and history.

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If you insist that it does and try to silence their voices then you are 1) gatekeeping in a way that has no basis in the reality of where we are with ME research 2) often crosses the divide into bullying

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3) will potentially harm other people whose stories may be similar to theirs and who have been diagnosed with ME.

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The best we can do is say:

ME is an illness with several possible etiologies. At some point there may be a distinction between people who start out with genetic connective tissue disorders or CCI and present as having ME, and people who develop/acquire ME in other ways.

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For people with CCI there are treatments that may alleviate some or all ME symptoms. If you have the resources to get tested for CCI, it may lead to treatment. Here is a link to some places where you may be able to get tested _______________.

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For people with ME who don't have known genetic connective tissue disorders and/or CCI, there may be a "degradation" of collagen or connective tissue that is the result of infection and/or MCAS and this may have a relationship to ME symptoms.

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But at this point we don't know and there is much research to be done.

Please share information that is available and from reliable sources about ME, MCAS, CCI, EDS, etc. to help people find any appropriate care that might be available.

And please be kind to each other.

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