#MEawarenesshour: first symptom-themed hour, 24th June
Next Wednesday (24th june) we’ve decided to try something a little different for #MEawarenesshour. Instead of talking in general about ME we would like to focus on one of its major symptoms, PEM – Post Exertional Malaise.
Why? Because PEM is one of the most misunderstood symptoms of ME and we would like to try and change that a bit. Let’s use twitter to explain to the outside world what it’s like to have to ‘pay’ for everything we do. How the smallest activity mental or physical can wipe us out for days, weeks and even months.
So please share your experiences of PEM using the #MEawarenesshour hashtag next Wednesday between 8pm and 9pm (London time) to shine a light on this debilitating and dreadful ME symptom.
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– Amanda Carroll
1 thought on “#MEawarenesshour Special Post Exertional Malaise Hour”
Since the year 2000, I also have been a sufferer of an ilnelss that presents all the symptoms of CFS . And since 2003, I have been practicing the protocols that were taught to me by Erik Johnson, with the same results as he and others have experienced almost complete control of symptoms, but not Remission and certainly not Cure .I also have testified these results before members of a US House of Representatives staff briefing in 2004 at the invitation of the office of Congressman John Conyers. This is a matter of Congressional Record. I subsequently was asked to found a national 501(c)(3) nonprofit corporation to assist with public education on the issue, which operated for over six years, but has since been dissolved in the face of lack of funding and support.I will ask readers here one thing: What possible motivation could there be for the level of political footdragging, obfuscation in the media, apparently deliberately falsified science and relentlessly opaque response to this issue as conducted by our national public health agencies? Look no further than the class of biotoxins that Erik Johnson identified as being causative of his, my, and the ilnelsses of what appears to now be millions in this country. Toxic Mold and the liabilities it presents are a central policy concern of Industrial interests in this country, as lobbied by the US Chamber of Commerce. And there is direct evidence that they have mounted an ongoing campaign to kill both public awareness and government response to this issue, into which numerous public health advocacy groups have called for Congressional investigation. So, now thanks to Jeri McClure Curre’s brave testimony not only does every person at the CFSAC meeting know about this potential clue to solving this ilnelss, they are now on notice that the entire CFS community knows why they have been stonewalled for 27 years.Jonathan Lee WrightFormer DirectorFungal Disease Resource Center, IncA Colorado 501(c)(3) nonprofit corporation
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