MCAS and CFS research

[ebethc]

Are any CFS researchers studying MCAS or mast cell disorders?

I feel like this is a key part of CFS, but don't recall that any of the top researchers are studying it... eg, I don't believe any of the NIH grant recipients or Pineapple Fund recipients (OMF) are doing this...

 

[Neunistiva]

As far as I know only Dr. Marshall-Gradisnik looked at mast cells in ME/CFS patients

https://www.ncbi.nlm.nih.gov/pubmed/27362406

 

[ebethc]

As far as I know only Dr. Marshall-Gradisnik looked at mast cells in ME/CFS patients

https://www.ncbi.nlm.nih.gov/pubmed/27362406

well, that's discouraging... the polls show ~40% of the CFS'ers have mast cell problems.. If they're not researching the right things, then what difference does research make? same as it ever was.

 

[Neunistiva]

@ebethc I too share your curiosity about MCAS. But there is no one right thing to research. If we knew what THE THING was, then 90% of ME/CFS mystery would already be solved.

It's not like researchers are going in blindly. They are following the data and their own hypothesis. And they certainly have more information and knowledge than you and I have.

 

[ebethc]

@ebethc They are following the data and their own hypothesis.

are they?? if so, it's data that doesn't include the subset of cfs patients that I'm in..

• last july stanford researchers announced that they found 17 cytokines linked to CFS and cytokines are released by mast cells; no mention of mast cells or follow up research on mast cells or other chemicals that mast cells release... https://goo.gl/m8HhhP
• Of the 4 recipients of NIH grants last Fall, none are following up on mast cell problems (to my knowledge, ie, mast cell research could be a secondary interest and therefore not in press release info...)
• I don't believe that OMI does any research in this area

this subset def exists..

• A poll on PR found that ~40% of respondents had mast cell symptoms, I couldn't find a formal poll, but I might look more today if I had the energy... anyway, mast cell discussions all over the place on PR and Health Rising..
• this is interesting..http://www.mastcelldisease.com/mast-cell-disease-chronic-fatigue-mcas-cfs-related/

@ebethc And they certainly have more information and knowledge than you and I have.

Nope.

• “This is probably one of the last major diseases we know nothing about” - Ron Davis, leading CFS researcher, recipient of $5m from Pineapple Fund, expert...
• one of my fave quotes from a doctor to me: "You're just one of those people who is always going to have something wrong w them" .. Yale Medical degree, Stanford Residency, Immunologist
• one of my fave quotes in general: "Science is the belief in the ignorance of experts" feynberg

My concern is that we aren't even headed in the right direction for me personally and the ppl who share my CFS Subset symptoms... If you feel hope, then good for you... There's just no evidence for me personally to have any hope.. No need to respond..