Author Archives: M.E. In The 21st Century

About M.E. In The 21st Century

At time of writing, I live in Oz, am a 61 y o grandmother, have had M.E. for about 33 years along with Fibromyalgia and Bilateral Tenosynovitis, among other health problems. The blog isn't really about me. Sure some of it will be, but mostly it's about M.E. and how it affects people who have it, and the ways M.E. patients are treated (or not treated) by the medical profession, allied health industry, disability groups, and their families & friends. There will be other subjects commented upon too. I really cannot, refuse to, concentrate on just one area of interest to the exclusion of everything else. I intend to update this info later.

‘Highly Misleading’

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‘Highly Misleading’

OMEGA


BACKGROUND
: Publications from the PACE trial reported that 22% of chronic fatigue syndrome patients recovered following graded exercise therapy (GET), and 22% following a specialised form of CBT. Only 7% recovered in a control, no-therapy group. These figures were based on a definition of recovery that differed markedly from that specified in the trial protocol.

PURPOSE: To evaluate whether these recovery claims…

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Alem Matthees: how an Australian’s FOI request busted open a UK science scandal

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Alem Matthees: how an Australian’s FOI request busted open a UK science scandal

ME Australia

by Sasha Nimmo

In September 2016, Queen Mary University of London (QMUL) was compelled to release the data from the 2011 PACE trial, a trial which examined the effect of graded exercise therapy and cognitive behavioural therapy against standard medical care.

West Australian Alem Matthees was one of many people who wanted a closer look at the information from the study.

In March 2014, he filed a UK Freedom of Information Act request for the data, but Queen Mary University of London (QMUL), the institution that sponsored the PACE study, denied his request. On 18 June 2014, Matthees requested an internal review, but QMUL again denied his request. On 15 Dec 2014, he filed a complaint to the Information Commissioner (IC). In October 2015, the IC ruled in Matthees’ favour that the researchers were required to release the anonymised data of the study. QMUL appealed but again lost their appeal in…

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Pyrexic Disease (or, Why The Creation of SEID Should Concern Us All)

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Documenting M.E.

Since the recent release of the Institue of Medicine’s report recommending the creation of a disease called Systemic Exertion Intolerance Disease, there has been a lot of confusion over what exactly the report says, and whether it is a good thing for patients. Some are claiming the report itself is about something called “ME/CFS” and not ME, and therefore doesn’t apply to ME at all (if you’re confused about the distinct differences between ME and CFS, please read this post). These people tend to see the report as a good thing. Others see the report as further muddying the waters and creating yet another diagnosis where people with varying diagnoses will be thrown together inappropriately. Even the committee members themselves, who claim to have unanimously approved the report’s contents, give varying answers on whether the report concerns ME patients or not. And while some (not all) of these committee…

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Eggy Burger Mush! A &#?$%!@ American Recipe!

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Hahaha

Mindless Productivity

Hey there, lovers of food and democracy,

I would like to share with you a real American recipe I like to call it…

EGGY BURGER MUSH!

Because that is its name. Its well-established name because it’s a well-known staple of the American diet!

What’s that, you say? You’ve never heard of the patriotic wonder that is Eggy Burger Mush!? Well put a thick stick between your teeth so you don’t swallow your tongue in excitement, because I’m going to tell you how to make it…THE AMERICAN WAY!

George Washington eagle flag bazooka

Here’s what you need!

An amount of beef-like meat
Some eggs
A number of mushrooms
A quantity of hot sauce
Some cheesish stuff
A kitchen
A skillety thing
A spatulaey thing
Something that makes other things hot

Most recipes make you buy particular brands of items and use specific amounts of things. Why is that? Because recipe-inventors are Communists and don’t believe in freedom.

sad vlad putin

Is that the face of…

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