Mast Cell Activation Syndrome (MCAS) - discussion thread

[EndME]

What you're saying on this thread (and similar things that you've said on other threads) will be a real eye-opener for most PwME - it's a medical insider's view that we can't normally see. How can we get this across?

I doubt they are an eye opener for the most PwME.

JE is seen as old dismissive physician that can't come to terms with the "new reality" and that is spreading fights amongst groups that should be fighting together and other physicians are championed. His statements are disregarded by those those where "substantial beliefs are a big part of the problem". I doubt that the factsheet is being greatly appreciated on Twitter. I suspect it is being looked down upon as being dismissive and that Tweets of MCAS/microclots/hEDS are more popular. At least that is my understanding.

For these things to be heard I think you either need other researchers that are respected joining in with JE, you need changes at the advocacy groups or you need a discussion between the opposing sides where everybody can see the arguments laid open (which I doubt will ever happen) or maybe you need something else entirely.

 

[Jonathan Edwards]

For these things to be heard I think you either need other researchers that are respected joining in with JE, you need changes at the advocacy groups or you need a discussion between the opposing sides where everybody can see the arguments laid open (which I doubt will ever happen).

Researchers tend not to come into contact with the medical politics so are rather outside this debate. Discussions have occurred and will continue to occur - not so much between opposing sides as amongst advocates with a wide range of approaches. The thing that I see needing to change is the message put out by the advocacy groups. I saw a document proposing a political party policy of ME/CFS that mixed it in with MCAS, POTS, Long Covid and whatever. The current UK government plan for ME/CFS seems to have been negotiated by people with no real understanding of the medical politics so there will be BACME rehab sessions but no provision for people dying of starvation. Apparently that is better than nothing.

Maybe someone should tell the naysayers that the 'new reality' is 8 DNA segments and that I have already got some researchers at a highly prestigious lab unit to set up a project on one of them.

 

[Jonathan Edwards]

The mistake I am most likely to make is not to keep my mouth shut when opening it might embarrass people. But I take seriously the phrase 'nothing about us without us'. The patient community is entitled to know what is going on 'on their behalf'.

 

[Sasha]

I doubt they are an eye opener for the most PwME.

I have been very surprised to hear that NHS doctors are opting out on a wide scale of dealing with PwME because so many PwME hold to these theories, and I've been around a long time. I thought they just didn't want us because they thought it was all in our heads. That's why I think it would be an eye opener for most.

 

[Sasha]

The mistake I am most likely to make is not to keep my mouth shut when opening it might embarrass people. But I take seriously the phrase 'nothing about us without us'. The patient community is entitled to know what is going on 'on their behalf'.

I'm a big fan of not keeping your mouth shut. Especially when nobody else is.

 

[Clio]

Seeing how "well" received the fact sheet was at the /r/cfs subreddit I think it may be worthwhile to do one debunking the common beliefs like mitochondria dysfunction neuroinflammation biobabble. Picking a few commonly shared studies and demonstrating what's wrong with their methodology in one place sounds like a good idea. Currently all of these debunks are spread across hundreds of threads and too much to take in at once.

 

[Nightsong]

Afrin even claims it causes autism.

Afrin claims it causes spontaneous human combustion:

 

[Jonathan Edwards]

Afrin claims it causes spontaneous human combustion:

That is a truly remarkable find.

I keep thinking that I had given up giving a bit of the benefit of the doubt.
But I had not expected to see something quite as science fiction as that.
Even the writers of Death in Paradise could not think up something as implausible.
The invocation of mast cells is without credible basis.
It is worth a read. This is what patients are putting their faith in it seems.

 

[Hutan]

We have temporarily closed this thread for moderation review

 

[Trish]

Moderator note

Moderators have reviewed the recent discussion on this thread. We are removing comments that focused more on other posters than on the thread subject, and replies to those posts.

Where there are different views, discussion is more productive, and easier for others to follow and join in, if members focus on discussing the subject and giving reasons and evidence for their opinions.