-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
2017 ME/CFS Awareness Day Media Coverage (post links here)
- Thread starter Old Bones
- Start date
6 Ways to Raise Awareness of ME/CFS When You Have Limited Energy
https://themighty.com/2017/05/chronic-fatigue-syndrome-raising-awareness-without-energy/
From Scottish Parliament - they're even using the #MillionsMissing hashtag
Retweet
cheers @emsho for all your articles in the Scottish press this week and for your hard work on #MillionsMissing Scotland!!
Go Scotland !!!
Retweet
cheers @emsho for all your articles in the Scottish press this week and for your hard work on #MillionsMissing Scotland!!
Go Scotland !!!
Last edited:
The Mighty:
What It Was Like Going to an ME/CFS 'Millions Missing' Protest by Niamh Kane
https://themighty.com/2017/05/millions-missing-dublin-myalgic-encephalomyelitis-chronic-fatigue/
What It Was Like Going to an ME/CFS 'Millions Missing' Protest by Niamh Kane
https://themighty.com/2017/05/millions-missing-dublin-myalgic-encephalomyelitis-chronic-fatigue/
http://www.scotsman.com/news/health...ness-protest-leaves-a-big-footprint-1-4444515
Scotsman: Millions Missing ME awareness protest leaves a big footprint
Read more at: http://www.scotsman.com/news/health...ness-protest-leaves-a-big-footprint-1-4444515
Read more at: http://www.scotsman.com/news/health...ness-protest-leaves-a-big-footprint-1-4444515
This is journalist. Retweet and thank him.
https://twitter.com/KevanChristie?ref_src=twsrc^google|twcamp^serp|twgr^author
kevan.christie@jpress.co.uk
Last edited:
Andy_Burnham
British Labour MP and past Secretary State for Health. Recently became Mayor for Manchester.
https://en.wikipedia.org/wiki/Andy_Burnham
Retweet and thanks.
British Labour MP and past Secretary State for Health. Recently became Mayor for Manchester.
https://en.wikipedia.org/wiki/Andy_Burnham
Retweet and thanks.
Andy Burnham MP has been instrumental in Hillsborough scandal and cover up and bringing some justice to bereaved families.
30 year ME Scandal and cover up has had a lot of parallels with 30 year Hillsborough scandal and cover up.
See PR forum: http://forums.phoenixrising.me/inde...hority-accountability-bill.46684/#post-830158
More info on Hillsborough: https://en.wikipedia.org/wiki/Hillsborough_disaster#Hillsborough_Independent_Panel
Response by another ex MP:
30 year ME Scandal and cover up has had a lot of parallels with 30 year Hillsborough scandal and cover up.
See PR forum: http://forums.phoenixrising.me/inde...hority-accountability-bill.46684/#post-830158
More info on Hillsborough: https://en.wikipedia.org/wiki/Hillsborough_disaster#Hillsborough_Independent_Panel
Response by another ex MP:
Retweet to thank them for covering.
The Herald Scotland: ME campaigners take Millions Missing campaign for more research to Parliament
Best bit I have seen in a newspaper. Wait for it.....................
http://www.heraldscotland.com/news/...n_for_more_research_to_Parliament/?ref=twtrec
Click through to get it to Top read story in Scotland.
thanks to @emsho again.
Last edited:
ABC Australia radio with Warren Tate of Otago:
https://radio.abc.net.au/programitem/pgd6oPPdDV?play=true
https://radio.abc.net.au/programitem/pgd6oPPdDV?play=true
slysaint
Senior Member
- Messages
- 2,125
already posted by @Yogi http://limitedcapability.blogspot.co.uk/2017/05/millionsmissing-protest-london-120517.html?spref=tw
Wanted to put the speech on this thread:
"The neglect of people with ME by governments and their health authorities is a global scandal. And there are protests like this one happening across the world today.
But here in the UK we’ve endured something perhaps even more cruel than neglect of our disease; we’ve had a deliberate cover up.
I want to tell you about it because you won’t read it in the press, and your doctor probably doesn’t even know about it.
Here in the UK we’ve endured a whitewash of our disease that has propelled the careers of a powerful group of clinicians and researchers, while we patients have seen no benefit, and many of us have even been harmed by their programme.
I became bedridden as a result of their so-called treatment.
The scandal of ME in the UK goes by the name of PACE.
PACE was a research trial of treatments for ME aimed at modifying patients’ thoughts and behaviour. It was based on the notion that ME is not an organic disease but a psychosomatic disorder, a view rejected by The US Institute of Medicine and the WHO.
Among the international scientific community PACE has become a byword for dishonest and unethical research practices, for the vested interests of an elite taking priority over patients’ health.
PACE researchers manipulated their methodology so you could be more disabled at the end of the trial than you were at the beginning and yet be classed as recovered.
PACE researchers illegally withheld their data from fellow scientists to avoid scrutiny of their methods.
PACE researchers ignored the overwhelming evidence showing that their graded exercise therapy made many people’s illness even worse than it already was.
PACE researchers then said that those patients who dared question their results were a deranged or militant mob standing in the way of science.
PACE research showed no improvement in ME on any objective measures from their treatment of cognitive behaviour therapy and graded exercise, in trial that costs £6 million of taxpayers’ money.
And why aren’t these researchers being held to account? Follow the networks of power and influence in UK medicine and you will see that PACE researchers and their great patron occupy the highest of ranks in the medical establishment. Their reputations appear to be untouchable. We the patients are allowed no say in
Meanwhile PACE and its discredited hypothesis continues to drive NHS policy on ME, and in turns impacts how people with ME are treated by welfare and social care systems. Patients are still routinely told to get out and exercise. People’s health continues to be put in danger.
Right now children are being subjected to trials of graded exercise therapy by colleagues of the PACE team at the University of Bristol.
The Dept of Health can no longer stay silent. The Dept of Health must not be complicit in the scandal of PACE.
We demand an end to trials of graded exercise therapy on children.
We demand that NICE reviews its guidelines on ME to remove the harmful influence of psychiatrists associated with PACE.
And we demand that Dept of Health take the lead in promoting the new research agenda emerging from outside the UK which gives us hope and consign the PACE agenda to history.
The millions missing here today are crying out for our government to invest in research into the causes and treatments for ME. We need science that is honest and ethical and puts patients first."
Wanted to put the speech on this thread:
"The neglect of people with ME by governments and their health authorities is a global scandal. And there are protests like this one happening across the world today.
But here in the UK we’ve endured something perhaps even more cruel than neglect of our disease; we’ve had a deliberate cover up.
I want to tell you about it because you won’t read it in the press, and your doctor probably doesn’t even know about it.
Here in the UK we’ve endured a whitewash of our disease that has propelled the careers of a powerful group of clinicians and researchers, while we patients have seen no benefit, and many of us have even been harmed by their programme.
I became bedridden as a result of their so-called treatment.
The scandal of ME in the UK goes by the name of PACE.
PACE was a research trial of treatments for ME aimed at modifying patients’ thoughts and behaviour. It was based on the notion that ME is not an organic disease but a psychosomatic disorder, a view rejected by The US Institute of Medicine and the WHO.
Among the international scientific community PACE has become a byword for dishonest and unethical research practices, for the vested interests of an elite taking priority over patients’ health.
PACE researchers manipulated their methodology so you could be more disabled at the end of the trial than you were at the beginning and yet be classed as recovered.
PACE researchers illegally withheld their data from fellow scientists to avoid scrutiny of their methods.
PACE researchers ignored the overwhelming evidence showing that their graded exercise therapy made many people’s illness even worse than it already was.
PACE researchers then said that those patients who dared question their results were a deranged or militant mob standing in the way of science.
PACE research showed no improvement in ME on any objective measures from their treatment of cognitive behaviour therapy and graded exercise, in trial that costs £6 million of taxpayers’ money.
And why aren’t these researchers being held to account? Follow the networks of power and influence in UK medicine and you will see that PACE researchers and their great patron occupy the highest of ranks in the medical establishment. Their reputations appear to be untouchable. We the patients are allowed no say in
Meanwhile PACE and its discredited hypothesis continues to drive NHS policy on ME, and in turns impacts how people with ME are treated by welfare and social care systems. Patients are still routinely told to get out and exercise. People’s health continues to be put in danger.
Right now children are being subjected to trials of graded exercise therapy by colleagues of the PACE team at the University of Bristol.
The Dept of Health can no longer stay silent. The Dept of Health must not be complicit in the scandal of PACE.
We demand an end to trials of graded exercise therapy on children.
We demand that NICE reviews its guidelines on ME to remove the harmful influence of psychiatrists associated with PACE.
And we demand that Dept of Health take the lead in promoting the new research agenda emerging from outside the UK which gives us hope and consign the PACE agenda to history.
The millions missing here today are crying out for our government to invest in research into the causes and treatments for ME. We need science that is honest and ethical and puts patients first."
This Mother’s Day, We’re Fighting For Women’s Health Equality
MS Blog Magazine
http://msmagazine.com/blog/2017/05/...&utm_medium=Social&utm_campaign=SocialWarfare
by @RivkaRivka
Evening Express: ME RESEARCH CALL BACKED BY MSPS
https://www.eveningexpress.co.uk/pipe/news/scotland/me-research-call-backed-by-msps/?utm_source=twitter …
Some great work in Scotland. But we need to be careful that AFME (who support PACE trial) will just lead to a repeat of GET/CBT in Scotland and undo the SGPS. This campaign will be self-defeating with AFME.
The charities that should contact the Chief Scientist Office and the Scot Government are InvestinME, 25% ME Group and Tymes Trust. Can people who are in contact with these charities let them know to contact Scottish Government.
https://www.eveningexpress.co.uk/pipe/news/scotland/me-research-call-backed-by-msps/?utm_source=twitter …
Some great work in Scotland. But we need to be careful that AFME (who support PACE trial) will just lead to a repeat of GET/CBT in Scotland and undo the SGPS. This campaign will be self-defeating with AFME.
The charities that should contact the Chief Scientist Office and the Scot Government are InvestinME, 25% ME Group and Tymes Trust. Can people who are in contact with these charities let them know to contact Scottish Government.