A quickening in the pace of academic endeavour on behalf of people with ME/CFS is reflected in the Summer edition of ME Essential that has today been delivered to MEA members.
In our quarterly magazine, one can almost feel the bolts blow apart as they release the booster rocket to send Good Ship ‘UK ME/CFS Research Collaborative’ on a mission to make more things happen in ME research.
The magazine covers in words and pictures the launch of the Collaborative that was attended by our royal patron, HRH The Duke of Kent, in London on April 22.
Elsewhere, we’re brought back down to Earth as we present picture coverage of the big ‘All Fall Down’ demo in Westminster that reminded the public of the huge difficulties being faced every day of their lives by people with severe forms of the illness. Well done to MEA trustee Nicki Strong and her son Jamie for organising the day!
And Professor Derek Pheby, a powerhouse in the world of ME research for many years, reveals the horror of what happened to him and his family when he started blowing the whistle on the way the authorities treated them after their son went down with ME 34 years ago, at the age of eight.
Elsewhere, covering the world of daily living (and daily failing through no fault of their own), MEA medical adviser Dr Charles Shepherd delivers his usual range of carefully researched material to help folk make a little more sense out of their lives.
His latest Management File looks at one of the Government’s latest ‘innovations’ on the welfare front, the Personal Independent Payment (PIP) and he writes: “As with DLA, this is a benefit that people with moderate or severe ME/CFS should consider applying for”. PIP is being introduced to replace Disability Living Allowance.
In his always eagerly awaited ‘Ask the Doctor’ column, Dr Shepherd tackles questions on:
* The American refusal to approve Ampligen in the treatment of ME/CFS
* The clinical trial process required to test the efficacy and safety of Rituximab about the promising (but small) Norwegian trial
* Research being done on mitochondrial dysfunction and its role in the development of ME/CFS
* What help might be available to help with necessary building alterations at home?
* Problems with eyelid twitching, which do appear to be more common in people with ME/CFS than in the general population
* Why someone’s GP won’t at least them try the calcium channel blocker drug, Nimodopine
* Whether an unintended consequence of work of the new Research Collaborative might suck funding out of promising, existing biomedical research
* What help is available to help people recover from the nausea that can accompany this illness.
We’ve started a new regular column looking at particular bits of research and where they are taking us.
This time, we look at a Californian study into whether examination of cytokine flare-ups associated with fatigue severity provide evidence of an inflammatory pathology in this illness. And we also comment on an autoimmune study being carried out closer to home in Carshalton.
Our editor covers a snap survey of the views of members of the contents, readability and relevance of the magazine. This was carried out among a randomly-selected 100 readers when the last issue was posted out and it brought in a gratifying 40 responses. Thanks to all those who took the time to help us in this way.
There’s a review of Brian Jarman’s new novel The Missing Room and, among a slew of fundraising stories, we meet the ex-England footballer and his son – currently with Scottish Premier League side Motherwell – who are both raising money for the ME Association. Mark Hateley, Tom and all your family – a great big thank you.
ME Essential is posted out to all members of the ME Association. For information about membership, please click HERE.