Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

Tilly said:
We are at the stage of chickens
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But this is exactly the point @Tilly. We know very little. (Although what we do know provides fairly good evidence for there being no relation between 'MCAS' or 'hEDS' and ME/CFS. It is not that nobody has looked. They have, and nothing was found.)

And if we know very little it is dangerous for advocates to repeat pseudoscientific stories from private physicians if they do not themselves have the scientific background to know they are valid.

As I have said before, I see serious harms that can come of this. If carers share bogus information on social media it may have a seriously negative impact on children and young people in their care. This sort of bogus information plays into the hands of social services inappropriately taking children into care. Whole families may be destroyed as a result. It provides the basis for claims of FII.

What we are discussing has nothing to do with the management of vitamin D deficiency or Coeliac disease or allergic reactions. Those are straightforward medical matters about which we have reliable information. It is about claims of co-morbidities for ME/CFS for which we have no evidence.
 
Tilly said:
There is a lot more but is you go way back or list those that treat and talk about Mast cell
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I managed to read all those citations, @Tilly. They are a random mixture of all sorts of arguments linking these things together in various ways but taken together they provide not a shred of evidence for any link between ME/CFS and "MCAS". If anything they are about quite different links with other things. You cannot do science just by randomly throwing a whole lot of stories into a bag and saying they prove what you want to believe.
 
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