UPDATE: #MEAwarenesshour reaches beyond Myalgic Encephalomyelitis Patients

#MEAwarenesshour uses Twitter to reach beyond the ME/CFS patient community

meawarenesshour1
From the organizer, Amanda Carroll:
The 10th of June #MEawarenesshour: only our second ME awareness hour and what a success!
There was a great response, hundreds of tweets and it turns out that doctors, pharmacist and health workers around the world tuned in to read our tweets.
Check out what people from around the world are saying:
meawarenesshour4
meawarenesshour3
meawarenesshour2
Thank you for making it such a great event. Well done everybody! Lets see if we can make next Wednesday ME hour even bigger.
Did you miss last week’s hour? Check out all the #MEAwarenesshour Tweets.

Facebook
Twitter
WhatsApp
Email

1 thought on “UPDATE: #MEAwarenesshour reaches beyond Myalgic Encephalomyelitis Patients”

  1. Sickbuildings Yahoo Group.Fri Mar 10, 2000Erik wrote:>Apparently Sweden is way ahead of us in studying this. I’m told that they have idiifnteed a housing project contaminated with stachybotrys where the colony was so tightly sealed that no spores were escaping and the toxic volatile organic compounds alone were causing inhabitants to become ill.The tests I have done on myself indicate that the v.o.c. s are sufficient to re establish all my symptoms without inhalation of the spores. My sensitivity is sufficiently extreme to enable me to easily identify contaminated materials and correlate period of barometric pressure change to increased concentration of toxins as the mold sporulates. >My experiment consisted of abandoning all my possessions and moving into a new camper. I wash everything that goes into the camper including myself. I sleep on a plastic sheet and use 4 sleepingbags that I wash every 3 days each so I can rotate any which become contaminated. >I wanted to take my experiment to the ultimate length I could manage to determine how much effect the mold was truly having on my CFS. To my astonishment, many of my symptoms disappeared completely and the ones that remain are greatly diminished and are gradually going away leaving onlythe reactivity intact.>When I first moved into the camper, I measured the time between exposure and full reactivity as about 4 hours. The more successful I was at avoiding mold, the quicker my reaction. After two yearsof practicing avoidance, my reaction time is now almost immediate for penicillium and about 5 minutes for what I believe to be Stachybotrys. >My experience indicates that moving would do you little good if you take contaminated possessions with you, and if you go somewhere that has this stuff and then carry it into your bedding, the up-regulation during sleep would not give you sufficient time to rejuvenate. My problem at this pointis not the toxicity of the mold, but my own response to amounts that are certainly no greater than parts per million, just as we see in an anaphylactic reaction to aflatoxins in peanuts suffered by those who have been sensitized. >I wish there were a pill for this mold or some easy way to spray bleach on it, but as you know, the toxin adsorbs onto virtually any material and any attempts to mechanically remove the colony can spread enough spores to make a sensitized person totally unable to endure the area. >Not everybody is going to be willing to go to the lengths I did (I’ve been telling people with CFS about this for two years and no takers so far) but I had just about had it with feeling sick all thetime. I would be willing to sleep in a car in the desert to feel as good as I do now, but it’s not necessary. I think the skills necessary for avoidance can be taught. One only needs to think like a mold spore, and with the level of cognitive dysfunction we suffer, that’s pretty easy!

Comments are closed.

Latest News

DHSC released a new progress Report

DHSC has released an update on the progress of the work underway to support the development of a Delivery Plan on Myalgic Encephalomyelitis / Chronic Fatigue. This is dated from December 2022.You can read the full report using the link below: DHSC Information Bulletin Dec 22 FINAL MECFS updated

Read More »
Gold fireworks lighting up over a black background. The words, TOP HITS 2022 is in the center in white lettering. the words: #MEAction accomplished a lot last year is undernether with the #MEAction logo

Let’s Look at #MEAction’s Top Hits from 2022

As we ring in the new year, it is a wonderful time to reflect on how much #MEAction accomplished in a very busy and exciting 2022! There are so many wins to share, so we decided to narrow down the list to our TOP HITS! ——————- #MILLIONSMISSING 2022: * Bringing together the powerful Virtual #MillionsMissing

Read More »
A photo from Millions Missing Scotland of a group of 20 protestors outside the Scottish Parliament. They’re looking serious and holding signs that say Millions Missing, and a pledge signed by MSPs. Many are wearing red ME Action t-shirts. A yellow icon of a person is overlaid next to them with an arrow pointing to it and the words ‘Could it be your MSP?’ A red banner along the bottom says ‘Share your story and ask your MSPs to stand up for people with ME.’

Ask your MSPs to stand up for people with ME

Sue Webber MSP’s motion about ME will be debated in the Scottish Parliament on Thursday 2nd February – and your MSPs should be there! The motion calls on the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME, including education of healthcare professionals and development of specialist services. We’re pleased

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top