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TOPIC: MCS as Mast Cell Activation Disorder

Mast Cell Activation Disorder as cause of MCS 4 years 2 months ago #13

  • Jodie
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For a list of doctors in the UK able to treat MCAS (Mast Cell Activation Syndrome), please join www.facebook.com/groups/368740546663534/
and look in the 'Files' section. This list is changing all the time, & there are now about 20 UK specialists ...

Jodie
Last Edit: 2 years 9 months ago by Jodie.
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Mast Cell Activation Disorder as cause of MCS 4 years 1 month ago #14

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The first UK seminar on Mast Cell Activation Syndrome (MCAS) was held in London this week, organised by the members of www.ukmasto.org/

Dr Lawrence Afrin from the US led the seminar. Apparently a huge success - we are finally making headway with this horrible disease! Info from one of the organisers below. I'll be ordering a DVD for myself and one for my GP practise - I don't want them scratching their heads in frustration for decades with anyone else as they did with me ! It is now thought that 1-16% of the population is affected by MCAS.

"A very big thank you to everybody who came to the Afrin seminar. It was wonderful to put lots of names to faces and to meet you all. For those who didn't come we started the morning with a room full of 36 doctors from every speciality. Dr Afrin had them riveted with a fantastic presentation - from his first MCAS patients right through the complicated blood and mediator science and finally the areas of treatment. It became obvious from the many questions that the Drs were asking that many of them were just taking on board for the first time the diversity and severity of this disease​, ​all of them want a copy of the presentation which is fantastic in itself. We will be letting you all know in time how you will be able to access both the video and the slides he used. Also , as I said yesterday if any of you have any questions for Dr Afrin you can send them to me and he has agreed to answer them.

One of the most exciting things that came out of the day is that Dr Afrin has agreed to become one of our medical advisers on MCAS along with possibly a few others.
As bit of history was made in that room as it was the first dedicated MCAS seminar to be held in the UK and we will make sure it is not the last!
"
Last Edit: 4 years 1 month ago by Jodie.
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MCS as Mast Cell Activation Disorder 3 years 9 months ago #15

  • Bruce Hart
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Hi Jodie. I wanted to let people know I have permanently retired my MCAD website. I didn't have the energy to make it an up-to-date comprehensive summary so I kept feeling uncomfortable that I may mislead somebody by omission.

Also I've become more interested in irritant receptors, particularly TRPA1 & TRPV1, on sensory nerves and other cells that can be activated by diverse chemicals to induce inflammation and other symptoms. And the website was originally created with primary focus on MCAD and that is now too restrictive for what I want to write about.

I plan to later read a lot of textbooks and create another website, maybe in a blog style, where I don't feel as obligated to give a comprehensive summary on anything and where I can write on anything I want. And with having a very visible date on articles I will not be made as uncomfortable when statements become outdated.
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MCS as Mast Cell Activation Disorder 3 years 9 months ago #16

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Hi Bruce, thanks for letting us know. So sad tho - I know many ppl who have found what you put up there to be a revelation & have consequently found a path thru to a specialist & an "acceptable" diagnosis (Including me!) . Hope you can add some of that info to yr new blog, I know there were many referenced papers backing up what you had put together & those don't go out of date too quickly ;) Wishing you the very best with the blog, I reckon that will also be a revelation :) - let us all have a link when you are ready. I sure hope your health improves too - you deserve better - the world seriously needs more folks like you & Maff.

Catch up with you later! XX
Last Edit: 3 years 9 months ago by Jodie.
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MCS as Mast Cell Activation Disorder 3 years 9 months ago #17

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Hi Bruce, thanks for letting us know. Very sorry to learn that you're shutting down your MCAD site but totally understand your reasons. I struggle badly with knowing that much of the information here on EiR has been superseded by new study findings. In the vast majority of cases the content here does have publication and 'last modified' dates however, so readers can at least take that into account. This site has grown so large that I simply can't keep everything up to date any longer - it realistically needs a team of at least half a dozen staff but unfortunately it's still just me!

On topic though, I do plan to update the MCS page shortly with information added regarding both mast cell activation and sensory nerve irritant receptor involvement (with help from Mike Badolato's work). My personal believe remains that the downstream effects of these still fit the central sensitisation theory (amygdala / limbic system) and it all links together quite "nicely" from a theoretical / academic perspective. After all, the hypothalamus is what's dealing with all the sensory input from immune, nervous and endocrine systems and deciding what to do with it, which in MCS is the production of the typical symptoms with individual variations based on genetics and other factors. Don't get me wrong, this is not to say that MCAD and irritant receptor agonism on sensory nerves don't cause symptoms directly in their own right, I just like to look at things from a 'systems medicine' perspective - big picture. Focusing therapy on any pathology in the system can obviously produce very positive results (as Jodie's experience proves) as nothing in the body works in isolation. It's therefore essential to pinpoint every piece of the puzzle. We all have our on views and different experiences and that's the beauty of discussions on forums and elsewhere :)

Anyway, you've provided readers of EiR with a lot of valuable information and things to think about Bruce so I for one want to say a big thank you and hope you'll continue to drop in or perhaps we'll cross paths elsewhere in future!

All the best and good luck with your new research direction!
If you are going through hell, keep going - Winston Churchill
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MCS as Mast Cell Activation Disorder 3 years 9 months ago #18

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Jodie, I forgot to mention that both MCS and Electrical Hypersensitivity (EHS) are now officially "acceptable" diagnoses in their own right so progress is being made and hopefully others won't struggle as much as we have had to with the medical establishment in future - *fingers crossed*!
If you are going through hell, keep going - Winston Churchill
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