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Didint Lipkin find pro inflammatory cytokines in PWME? Havent they been found by other researchers? I also have MCAS and inflammatory cytokines are often tested as high in people with this disease. I myself have tested very high for a number of them.

Not sure i would want to recommend this to my GP before i know what they will be talking about, what approach they will be taking.

Interesting that a few of us felt btter than normal afterwards. Mine then led to a worse than normal, which could have been the exertion of attneding appointment and the worry, or could have been related to the test.

I had it done a few years ago before MCAS kicked off. I was absolutely fine. In fact the test was negative, no issues, but i had the most incredible sense of wellbeing from the test and was then VERY tired for a few days afterwards. Nobody else seems to have had this feeling good from the test...

Im sorry i cant read through the thread today, but Dr Myhill is having her patients take their temperature up to 15 times a day to see if they need thyroid or adrenal glandulars. Consistently low temps with little variation means you need more thyroid hormones and wildly fluctuating temps...

Yes, i had a fighting spirit for a number of years, i fundraised, sold my house and traveled abroad three times a year to see a specialist in M.E. Sadly for me, it became clear i was getting worse from the failed treatment attempts and the travel. I am now considerably sicker than before i...

Great letter - takes a bit of reading and concentration! would love to add my name. Will PM it to you. Personally i think a long list of patient and patient advocate names has more heft.

I take Ranitidine/Zantac as an H2 inhibitor as i have MCAS. Its the only drug that controls my reflux (PPI's didnt work) so presume my gastric issues are mainly mast cell based/ My CRP has never been high. My functioning is not improved on this drug, but the reflux is and it helps when having a...

Well, one would usually have to have a PHD and be a professor. I think you will find Dr Professor Crawley is both a PHD and a professor, so is actually fully qualified as a researcher. http://www.bristol.ac.uk/social-community-medicine/people/esther-m-crawley/index.html

I noticed that - weird.

Exactly - who did the children inherit it from? other children? It is non sense. Compared to what in adults? First second or third infection? from when? birth? isnt that quite a wide variation anyway? Does she have published stats to back these comments up or is it anecdotal? Im asking these...

'interestingly its much more heritable in children' 'children seem to be more genetically vulnerable, which explains why they get it on their first second or third infection compared to adults' What does this mean? I'm afraid i cant make any sense of this section. Also has anyone got any idea...

Does anyone know where the prevalence data of 1 in a 100 children comes from please?

I changed my vote for Jen Brea as i agree that strategically its the best way to do it. How does the nomination process work? do lots of people nominate the best candidate and that alerts CNN, or does just one person nominate?

Given that a large proportion of PWME appear to have the co morbid conditions of either EDS 3 (hypermobile type), or MCAS (Mast cell activation syndrome) or both, can you say if there could be a mechanism for why this is, and do you consider these patients to be a separate sub grouping?

That's a great letter, thanks Andy. It's so great to see new advocacy coming out of this forum and people writing letters and just 'doing it'.

2nd egenration antihistamines dont have these effects. You could start with a low histamine diet, vitamin C daily in divided doses and quercetin

Thanks @Carly Maryhew for such great advocacy work, the references themselves are impressive! Now lets wait and see what they say...if anything.

Sounds just like pseudobulbar. Sorry you were experiencing this - sounds distressing.

Perhaps it is related to severity in some way? I agree that we get close to the edge of a lot of things emotionally when more severe. I also dont allow myself to laugh or cry much as it causes such severe PEM and crying makes me react a bit with flushing and itching. SO everything gets pushed...