May is ME awareness month. This year to raise awareness the ME community trust ( http://mecommunitytrust.org/ )is running a media campaign called 'Breaking the mould'. They wanted personal case to illustrate their article so I wrote in this short summary of me;
I've had ME for 12 years. Before that, typically, I seemed a healthy
child. I was always playing; I loved the Puppy and Kitty in my pocket
sets (still do, really)! I also went to ballet + modern dance lessons,
swimming, watch club, was beggining to learn the violin + was a junior
member of the RSPCA. Then when I was eight my grandma + hamster died
in quick succesion, followed by a unknown virus of the gut. I had a
terribly high temperature + was sick on everything even water
After such a terrible virus you'd expect me to to be rather weak but,
unfortuneately, I didn't recover. I was diagnosed with ME quite
quickly but, sadly, this didn't make my treatment any better. I was
admitted to hospital and given physio, then sent home and relasped
terribly
I don't really remember the following year. I know I lived on complan
all that time until we finally persauded our doctors to give me a
tube. I was admitted to hospital again around that time, which was a
painful experience, but was discharged after a few months
All in all I was paralyzed and bed-ridden for 7 years and was tube-fed
for 5 and a half. I remained at home, cared for by my parents. My
symptoms included; paralysis especially my legs + swallow,
hypersensitiveity, headaches, muscle pain, 'brain fog', muteness,
Orthiostatic intolerance, insommnia, spasms, severe nausea with a
period of vomiting and extreme tiredness
When I was 15 my health rapidly and dramaticly improved. My symptoms
receded. I was able to stand and use a wheelchair. At one stage I was
even able to walk independantly around the house though still needed a
wheelchair outside. I became very involved with my local wildlife
trusts. I enjoyed visiting their reserves, attending 'wild
learning'courses and was even part of a youth group.
However from the end of 2009 my health slowly worsend again until last
year, when I had a tooth infection and a bad back, I had a major crash
My worst symptom at the moment is vomiting which caused me to lose a
lot of weight (over 2 and a half stone). It comes and goes. I feel
rather like someone pushing a boulder up a hill. I'll just start to
feel better and put on weight, then a bout will hit me again. This has
led to a general worsening of symptoms especially tiredness,
hypersensitivity, cognative functioning and insommnia. I am now
housebound and have two part time carers to help look after me as well
as my parents.
I have tested positive for Mitochondria abnormalities which basically
means my body is litterally producing only half as much energy as
normal people. As well as this being a potential cause of why I feel
unwell, it also accelerates the ageing progress and causes problems
for the immune system
I always beleived that one day my body would naturally heal itself and
I'd return to my previous levels of health. Now I'm less confident of
recovering- unless someone finds a treatment.
I'm a member of the Let's do it for ME planning group - a campaign,
started by Invest in ME, to set up the 1st centre of excellence for
ME/CFS in Europe. The centre will conduct large scale, translational
research into ME/CFS funded by the charity
I haven't seen a GP once the entire lenth of this relapse. In fact its
a bizzare fact that I have only visited a GP surgury once since being
diagnosed
The centre also aims to educate medical professionals and treat
sufferers. Find out more at blog.ldifme.org
All I want is to be like other 20 year olds; to travel and go to uni;
to socialise and be independant; to walk, swim, dance and ride. I've
already lost a decade of my life to this wretched illness. Please
don't let me lose another
Showing posts with label campaigns. Show all posts
Showing posts with label campaigns. Show all posts
Sunday, 20 May 2012
Tuesday, 2 August 2011
Petition; NO MORE psychiatric research into ME/CFS
What is this petition about?
ME (myalgic encephalomyelitis) or, as the media and many doctors term it 'Chronic Fatigue Syndrome' (CFS), is a complex neurological condition leading to severe disability in many cases. About 250,000 people in the UK have this condition; up to 4 million in the USA and as many as 17 million worldwide.
Why are we petitioning?
For 30 years, the UK and American research establishments have either refused to fund research into ME/CFS in any meaningful way, or consistently funded research by psychiatrists who believe that ME/CFS has a 'biopsychosocial' basis (ie that it is psychosomatic, or all in our heads) the same thing they used to tell patients with diabetes and MS.
As any ME patient can tell you, you only have to spend a week with this condition to know it is not imaginary. Some patients have lived for more than 30 years severely disabled, unable to move, speak, think clearly and participate in any of the activities that make life worthwhile. Nobody would want to live this life, because a life with ME is no life at all.
Despite monopolising Government research budgets, the psychiatrists have failed to prove that ME is a psychological (or 'biopsychosocial') condition, or that their suggested treatments are effective.
Worse, ME/CFS has become a dustbin diagnosis for patients with all kinds of illnesses where chronic fatigue is one of the symptoms. This means that, not only are real ME patients not getting research funding for causes and treatments, but those who are wrongly diagnosed are not getting appropriate treatment either.
What needs to happen?
While the UK and USA Governments, research and medical establishments continue to ignore the problem, scientists around the world have produced some 4,000 peer-reviewed, published scientific papers which show clearly that there are systemic, biological changes in the bodies of ME/CFS patients. This is the research direction that is most likely to lead to finding a cause - and a cure.
Who are we petitioning, and what do we want?
So far, every study funded by Britain's Medical Research Council (MRC) into this condition has had a psychiatic basis. It is time the MRC stopped funding psychological research into ME.
In January, the MRC announced %uFFFD1.5m funding for research into the causes of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). Applications for funding must be made this June, and the MRC will make its decisions on which proposals to fund in November 2011.
It is important that ALL of this funding is focused onbiomedical research. It must not be wasted going over old ground or down any more blind alleys. It must capitalise on the work already done by such eminent scientists and physicians as Dr Jose Montoya of Stanford University, Dr Judy Mikovits of the WPI, Dr Harvey Alter at the NIH, Dr Nancy Klimas of the University of Miami, Dr Gwen Kennedy and her team at the University of Dundee and many others.
250,000 patients in Britain need to know they are no longer being ignored, sidelined or labelled as psychiatric cases. They need answers; they need treatments and they need them without any further delays.
ttp://www.thepetitionsite.com/1/no-more-psychiatric-research-into-mecfs/
Sunday, 10 July 2011
The welfare of lab animals
Even if the XRMV scandal hasn't successfully proved anything about the cause and genuiness of ME (as furthur studies and reports keep saying the original study was faulty), it has certainly proven in my mind how inefficiant biomedical research using animals is.
a) Because of the risk of contamination
b) because of the risk of animal disease spreading to humans
The UK government is currently holding a public consultation on how to implement a new EU Directive into UK law.
Not only is vivisection inefficiant if this EU Directive was translated word for word into UK law it could lower lab animals welfare due to the fact the spefications of the directive are lower than current UK standards. To quote the RSPCA 'animals may undergo more suffering and pain, inhumane methods of killing may be allowed and many labs could go years without being inspected! We cannot let this happen!
The government could easily allow our higher standards to remain, however we believe they are cutting standards just to reduce regulation!'
Please voice your opinion on this important issue before 5th of September, even if you agree with vivisection!
http://webarchive.nationalarchives.gov.uk/+/http://www.homeoffice.gov.uk/documents/cons-2009-animals-research/
a) Because of the risk of contamination
b) because of the risk of animal disease spreading to humans
The UK government is currently holding a public consultation on how to implement a new EU Directive into UK law.
Not only is vivisection inefficiant if this EU Directive was translated word for word into UK law it could lower lab animals welfare due to the fact the spefications of the directive are lower than current UK standards. To quote the RSPCA 'animals may undergo more suffering and pain, inhumane methods of killing may be allowed and many labs could go years without being inspected! We cannot let this happen!
The government could easily allow our higher standards to remain, however we believe they are cutting standards just to reduce regulation!'
Please voice your opinion on this important issue before 5th of September, even if you agree with vivisection!
http://webarchive.nationalarchives.gov.uk/+/http://www.homeoffice.gov.uk/documents/cons-2009-animals-research/
Wednesday, 18 May 2011
Burst our bubble campaign
www.investinme.org/IiME%20ME%20Awareness%20Burst%20Our%20Bubble.htm
Invest in ME are running a campaign this month (ME awareness month) called 'Burst our bubble'. The inspiration stems from the idea that ME sufferers live in a bubble. For more info see link
Friday, 29 April 2011
Fwd: EU: 3 Days to Save Herbal Medicine!
---------- Forwarded message ----------
From: Ricken Patel - Avaaz.org <avaaz@avaaz.org>
Date: Thursday, April 28, 2011
Subject: EU: 3 Days to Save Herbal Medicine!
To: "6chestnuts@googlemail.com" <6chestnuts@googlemail.com>
Dear friends,
In 3 days, the EU will ban much of herbal medicine, pressing more of
us to take pharmaceutical drugs that drive the profits of big Pharma.
The EU Directive erects high barriers to any herbal remedy that hasn't
been on the market for 30 years -- including virtually all Chinese,
Ayurvedic, and African traditional medicine. It's a draconian move
that helps drug companies and ignores thousands of years of medical
knowledge.
We need a massive outcry against this. Together, our voices can press
the EU Commission to fix the directive, push our national governments
to refuse to implement it, and give legitimacy to a legal case before
the courts. Sign below, forward this email to everyone, and let's get
to 1 million voices to save herbal medicine:
http://www.avaaz.org/en/eu_herbal_medicine_ban/?vl
It's hard to believe, but if a child is sick, and there is a safe and
natural herbal remedy for that illness, it may be impossible to find
that remedy.
On May 1st the Directive will create major barriers to manufactured
herbal remedies, requiring enormous costs, years of effort, and
endless expert processes to get each and every product approved.
Pharmaceutical companies have the resources to jump through these
hoops but hundreds of small- and medium-sized herbal medicine
businesses, across Europe and worldwide, will go bust.
We can stop this. The directive has been passed in the shadows of the
bureaucracy, and it cannot stand under the light of democratic
scrutiny. The EU Commission can withdraw or amend it, and a court case
is currently challenging it to do so. If European citizens everywhere
come together now, it will give legitimacy to the legal case, and add
to growing pressure on the Commission. Sign below, and forward this
email to everyone:
http://www.avaaz.org/en/eu_herbal_medicine_ban/?vl
There are arguments for better regulation of natural medicine, but
this draconian directive harms the ability of Europeans to make safe
and healthy choices. Let's stand up for our health, and our right to
choose safe herbal medicine.
With hope and determination,
Ricken, Iain, Giulia, Benjamin, Alex, Alice, Pascal, Luis and the rest
of the Avaaz team.
SOURCES:
EU herbal medicines law set for legal challenge:
http://www.euractiv.com/en/health/eu-herbal-medicines-law-set-legal-challenge-news-503563
European Union directive to ban natural remedies in favor of pharmaceuticals:
http://www.allvoices.com/contributed-news/8826364-european-union-directive-to-ban-natural-remedies-in-favor-of-pharmaceuticals
Traditional Chinese medicine firms may face delisting in EU market:
http://english.peopledaily.com.cn/90001/90776/90883/7343301.html
EU crackdown on herbal 'remedies':
http://www.independent.ie/national-news/eu-crackdown-on-herbal-remedies-2628345.html
Please sign!
From: Ricken Patel - Avaaz.org <avaaz@avaaz.org>
Date: Thursday, April 28, 2011
Subject: EU: 3 Days to Save Herbal Medicine!
To: "6chestnuts@googlemail.com" <6chestnuts@googlemail.com>
Dear friends,
In 3 days, the EU will ban much of herbal medicine, pressing more of
us to take pharmaceutical drugs that drive the profits of big Pharma.
The EU Directive erects high barriers to any herbal remedy that hasn't
been on the market for 30 years -- including virtually all Chinese,
Ayurvedic, and African traditional medicine. It's a draconian move
that helps drug companies and ignores thousands of years of medical
knowledge.
We need a massive outcry against this. Together, our voices can press
the EU Commission to fix the directive, push our national governments
to refuse to implement it, and give legitimacy to a legal case before
the courts. Sign below, forward this email to everyone, and let's get
to 1 million voices to save herbal medicine:
http://www.avaaz.org/en/eu_herbal_medicine_ban/?vl
It's hard to believe, but if a child is sick, and there is a safe and
natural herbal remedy for that illness, it may be impossible to find
that remedy.
On May 1st the Directive will create major barriers to manufactured
herbal remedies, requiring enormous costs, years of effort, and
endless expert processes to get each and every product approved.
Pharmaceutical companies have the resources to jump through these
hoops but hundreds of small- and medium-sized herbal medicine
businesses, across Europe and worldwide, will go bust.
We can stop this. The directive has been passed in the shadows of the
bureaucracy, and it cannot stand under the light of democratic
scrutiny. The EU Commission can withdraw or amend it, and a court case
is currently challenging it to do so. If European citizens everywhere
come together now, it will give legitimacy to the legal case, and add
to growing pressure on the Commission. Sign below, and forward this
email to everyone:
http://www.avaaz.org/en/eu_herbal_medicine_ban/?vl
There are arguments for better regulation of natural medicine, but
this draconian directive harms the ability of Europeans to make safe
and healthy choices. Let's stand up for our health, and our right to
choose safe herbal medicine.
With hope and determination,
Ricken, Iain, Giulia, Benjamin, Alex, Alice, Pascal, Luis and the rest
of the Avaaz team.
SOURCES:
EU herbal medicines law set for legal challenge:
http://www.euractiv.com/en/health/eu-herbal-medicines-law-set-legal-challenge-news-503563
European Union directive to ban natural remedies in favor of pharmaceuticals:
http://www.allvoices.com/contributed-news/8826364-european-union-directive-to-ban-natural-remedies-in-favor-of-pharmaceuticals
Traditional Chinese medicine firms may face delisting in EU market:
http://english.peopledaily.com.cn/90001/90776/90883/7343301.html
EU crackdown on herbal 'remedies':
http://www.independent.ie/national-news/eu-crackdown-on-herbal-remedies-2628345.html
Please sign!
Saturday, 19 February 2011
The art of disapointments
I'm disapointed about a couple of things atm.
Firstly Foggy Friends has closed its 'News, Views, Campaigns and Petitions forum, because its too difficult to moderate apparently, so I can no longer so easily keep up with the latest ME news or debate issues close to my heart. Its true I read the ME Research and Invest in ME newsletters but my main avenue of socialising with other sufferers is now closed off. I always thought they were such a democratic, well moderated bunch of folks too
I've been complaining about it to a man called cazzh who offered to moderate it so it could be reopened. Needless to say they took no interest;
Hi,
Just read your comment on the closing down of the 'News, etc' forum and would like to say I'd really appreciate it if you either moderated the forum so it could be reopened or started something else like it for people like me who want to have serious discussions can do.
Because we, as an ME community, need to have serious discussions. So that the parents of 22 year year old women like Joanne Butler aren't persecuted to the extent they have to leave their home, when their daughter dies of natural causes, because people refuse to admit ME is a fatal disease. So that children and severely affected adults aren't torn away from their loving families to be tortured in mental hospitals. So that people like 19 year old Alison Hunter don't die of mutiple, horrendous abnormalities that wouldn't be out of place in a sci-fi film. So that children like me don't grow up bedridden in a blacked out room with triple glazing
We need to help all our fellow sufferers on a world wide level, not just a personal one. There is more serious things than a few hard words and hurt feelings at stake
There are things that can help us but we need to fight for them. We all deserve a point of view so that we can all benefit in the way we need.
There are enough ME chat rooms for the pretty ones who only want to chat about craft, shopping and kittens. We need somewhere where those who want to fight can debate, exchange ideas and support each other and those that really suffer
Thank you
Rosa x
His reply;
Hi Rosa and thanks for you message. I thought nobody had noticed my posts actually, lol!
Well I offered help and was contacted by no-one privately plus then one of the mods stated on the thread that they were not looking to expand the team etc? Well I have plenty of experience to offer where moderating difficult topics on busy forums is concered but they would rather carry on just closing threads down and removing boards instead so I shan't be offering again. As for running my own forum, that is a hell of a lot of work (have done it before - not ME related) and is not a job for just one person. It is not that easy to get 'good' mods either though with the pet forum I ran back then, I knew all of my mods in real life too and also gave them some training.
I agree with you that we should be able to discuss serious topics but now it seems that anything that remotely resembles 'politics' is going to get suppressed.
Why we can not be treated like adults and be moderated properly instead of them taking the easy way and just not allowing important, serious topics is quite beyond me but at the end of the day, it is their forum and they can run it any way they like. If they want to kill the forum slowly by refusing to allow civilised debate under the guidance of experienced and impartial mods then that's their look out. 
I may start my own ME political forum so if you'd be interested in that, let me know!
Another source of irritation is my local GPs. They've shown no interest in the results of Dr Wights tests, never offer me any interest or support, didn't even fill in my prescription for LDN. Basically they're a waste of time. I'm finally going to leave them though. So we soldier on...
All that and toothache on top :p
Firstly Foggy Friends has closed its 'News, Views, Campaigns and Petitions forum, because its too difficult to moderate apparently, so I can no longer so easily keep up with the latest ME news or debate issues close to my heart. Its true I read the ME Research and Invest in ME newsletters but my main avenue of socialising with other sufferers is now closed off. I always thought they were such a democratic, well moderated bunch of folks too
I've been complaining about it to a man called cazzh who offered to moderate it so it could be reopened. Needless to say they took no interest;
Hi,
Just read your comment on the closing down of the 'News, etc' forum and would like to say I'd really appreciate it if you either moderated the forum so it could be reopened or started something else like it for people like me who want to have serious discussions can do.
Because we, as an ME community, need to have serious discussions. So that the parents of 22 year year old women like Joanne Butler aren't persecuted to the extent they have to leave their home, when their daughter dies of natural causes, because people refuse to admit ME is a fatal disease. So that children and severely affected adults aren't torn away from their loving families to be tortured in mental hospitals. So that people like 19 year old Alison Hunter don't die of mutiple, horrendous abnormalities that wouldn't be out of place in a sci-fi film. So that children like me don't grow up bedridden in a blacked out room with triple glazing
We need to help all our fellow sufferers on a world wide level, not just a personal one. There is more serious things than a few hard words and hurt feelings at stake
There are things that can help us but we need to fight for them. We all deserve a point of view so that we can all benefit in the way we need.
There are enough ME chat rooms for the pretty ones who only want to chat about craft, shopping and kittens. We need somewhere where those who want to fight can debate, exchange ideas and support each other and those that really suffer
Thank you
Rosa x
His reply;
Hi Rosa and thanks for you message. I thought nobody had noticed my posts actually, lol!
Well I offered help and was contacted by no-one privately plus then one of the mods stated on the thread that they were not looking to expand the team etc? Well I have plenty of experience to offer where moderating difficult topics on busy forums is concered but they would rather carry on just closing threads down and removing boards instead so I shan't be offering again. As for running my own forum, that is a hell of a lot of work (have done it before - not ME related) and is not a job for just one person. It is not that easy to get 'good' mods either though with the pet forum I ran back then, I knew all of my mods in real life too and also gave them some training.
I agree with you that we should be able to discuss serious topics but now it seems that anything that remotely resembles 'politics' is going to get suppressed.
Why we can not be treated like adults and be moderated properly instead of them taking the easy way and just not allowing important, serious topics is quite beyond me but at the end of the day, it is their forum and they can run it any way they like. If they want to kill the forum slowly by refusing to allow civilised debate under the guidance of experienced and impartial mods then that's their look out. I may start my own ME political forum so if you'd be interested in that, let me know!
Another source of irritation is my local GPs. They've shown no interest in the results of Dr Wights tests, never offer me any interest or support, didn't even fill in my prescription for LDN. Basically they're a waste of time. I'm finally going to leave them though. So we soldier on...
All that and toothache on top :p
Friday, 11 February 2011
ME; latest debate and videos
I have three new videos on my 'Videos and slideshows' page now.
The above is about a recent debate in the Houses of Parliament, UK on . It was initiated by Ian Swales, Lib Dem MP for Redcar in Middlesborough. I've only watched five minutes of it so far, its rather long, but I agree with most of what was said in the snatch I watched. Ian Swales seems like a nice politition. However I don't agree that the government has improved their attitude towards ME since the Cheif Medical officers report in 2002. In fact, since the appearance of the NICE guidelines, I feel things have got worse for ME sufferers rather than better
The second is a video on some research which has found white blood cell damage indicating the body has been attacked by a virus. My ME, as I have mentioned, was started by a virus and I also showed signs of viral attack in my early blood tests but it was overlooked so I'm glad this abnormality has finally been recognised and documented
This is an edit of an earlier video I made, simply to raise awareness of ME and questions in peoples minds. The song is a charity single, written and played by my glamorous, talented friend Chlay, to raise money for the ME Association. You can buy it here http://chlay.blogspot.com/2010/09/darcy-joy.html . Follow the iTunes link or just donate!
I'll try to keep up with my blog during my studies but it'll be more difficult, so untill I'm back all keep yourself AWAP x
The above is about a recent debate in the Houses of Parliament, UK on . It was initiated by Ian Swales, Lib Dem MP for Redcar in Middlesborough. I've only watched five minutes of it so far, its rather long, but I agree with most of what was said in the snatch I watched. Ian Swales seems like a nice politition. However I don't agree that the government has improved their attitude towards ME since the Cheif Medical officers report in 2002. In fact, since the appearance of the NICE guidelines, I feel things have got worse for ME sufferers rather than better
The second is a video on some research which has found white blood cell damage indicating the body has been attacked by a virus. My ME, as I have mentioned, was started by a virus and I also showed signs of viral attack in my early blood tests but it was overlooked so I'm glad this abnormality has finally been recognised and documented
This is an edit of an earlier video I made, simply to raise awareness of ME and questions in peoples minds. The song is a charity single, written and played by my glamorous, talented friend Chlay, to raise money for the ME Association. You can buy it here http://chlay.blogspot.com/2010/09/darcy-joy.html . Follow the iTunes link or just donate!
I'll try to keep up with my blog during my studies but it'll be more difficult, so untill I'm back all keep yourself AWAP x
Wednesday, 2 February 2011
Blue Ribbon Campaign for ME/CFS;We need to think of public concern first and our concerns second to with a Public Relations Fight
I read this on the Blue Ribbon campaign blog and found it of interest;
'We need Public Relations. That is going to be true today, tomorrow, and the day after the NIH study is published. Yes, it will get covered by the media. But then the study will fade away and the media will stop covering it. They will stop covering it because patients don't make any news for them to cover. The NIH study does not mean the messages we want to convey to the public will get there.
Public Relations for our disease is needed. It will be needed after the NIH study is published and after all subsequent rumored positive papers are published. However, just because we have a message to give to the public does not mean they want to hear it.
If we want the public to hear us then we need to tell the public what matters to them, not what matters to us. This is what will make the public care what matters to us.
What matters to the public is what is newsworthy, and what affects their family, friends and neighbors. How can we ever hope to win the public to our side if we are only interested in talking about ourselves?
We can hook the public with several newsworthy facts that are about them. That is how we make the public care. Journalists care about newsworthy facts. Politicians care about what effects their polls, and their support from the public. The public cares about what influences their life, and the lives of their family and friends.
Here are some of those issues the public is going to care about:
1. CFS and its link to XMRV
2. How many healthy people may be walking around carrying XMRV (4% of the population, possibly 7% of the population if we go by the Alter slide)
3. Three countries have taken the precautionary measure of banning people with CFS from donating blood, but the U.S. has not. While a lot about XMRV is unknown, just as a precaution, the blood supply needs to be protected.
Now these things don't say anything about patient care, problems with the CDC website, problems with our name and diagnostic criteria. Those are our concerns, and they are valid concerns.. But they cannot be addressed all at once, and nor will a public listen to it if they don't understand in the first place why it matters to them too.
In addressing the public, we must think first and foremost about their concern, rather than our own. We need to make ME/CFS matter to every part of society. We can't do that while we're telling the public only what concerns us.
To illustrate my point, I would like you to think of this scenario. You turn on the tv, and there is an ad about purple disease. You've never heard of purple disease before. The commercial tells you there has been a fight about the name of purple disease, some want to call it blue, others yellow. Patients with purple disease want lots of things. They want recognition. They want help. They want money for research. They want drugs to fight purple disease.
How fast would you switch the channel? How does the fight about purple disease affect you? Do you care about purple disease research based on this ad? What does purple disease have to do with you and your family? Why would you give a dollar or lift your finger during your busy life for something that does not touch your life in any way at all?
Now imagine a different scenario. You turn on the tv, and there is an ad for purple disease. You've never heard of purple disease before. The commercial disease tells you what purple disease is, and that it's been highly associated with an infectious disease. You hear other countries are taking action to make sure that the public is not exposed to this disease through the blood supply. You are told how many people may be carrying this infectious disease. You are told about outbreaks and stories about blood transfusions where people developed purple disease shortly after. At the end of the commercial you are asked to go to a website to donate and learn more about purple disease.
Do you care about purple disease now? Do you see and feel how purple disease could affect your family without ever actually using the literal words? Without being told all the issues that concern patients, does it now concern you? And now that you're concerned that purple disease is a serious thing what are you going to do? Hopefully, you are saying "yes, yes." and nodding as you read this.
Yes, we need the public to care about us. We need the public to be on our side. We need the public to run for us, walk for us, donate to research, write letters to the government on our behalf. We need politicians to move mountains.
Please ask yourself, why would the public care about our concerns if we are not putting the concerns of the public first?
We only have seconds to reach the public, before they turn the page, before they turn the channel. We live in the age of the soundbyte. Where words and entire sentences are reduced to letters. How fast do you stop looking at things that have nothing to do with you? How quick do you tune out from messages that are not thinking about your needs, or your life?
To get the public to care about us, we have to talk about their concerns as it relates to us first.
Those concerns are XMRV and the blood supply.'
Andrea Martell
Blue Ribbon Campaign for M.E./CFS
Though I don't agree that the only concerns are XMRV and the blood supply, I do think we need public relations and need to think deeply about how we go about it. I think we need to raise awareness of its affect on society such as how much it costs the economy because of all the people unable to work, also how serious it can be such as it leading to organ failure, acute pain and the number of adult ME sufferers who are dependant on child carers.
I think because we are very keen to lose the image of 'lazy yuppies' we tend to concentrate a little too much on our acheivements in the media such as how we passed exams, raised money via skydiving or whatever and set up charities as a result of our experiences. Also we only seem to concentrate on the fatuige part of our disease because its meant to be the one symptom we all have in common without mentioning the pain, dizziness or loss of muscle function
Faced with all the problems and worthy causes in need of support in the world, I do wonder, if I had not suffered and knew this disease inside out wether ME research would be top of my causes to support?Probably not... Causes such as habitat destruction, climate change which endangers us all or AIDS in Africa which kills half the population. Still people do raise money for illnesses like MS and Anerexia which aren't so common...
What do others think?
'We need Public Relations. That is going to be true today, tomorrow, and the day after the NIH study is published. Yes, it will get covered by the media. But then the study will fade away and the media will stop covering it. They will stop covering it because patients don't make any news for them to cover. The NIH study does not mean the messages we want to convey to the public will get there.
Public Relations for our disease is needed. It will be needed after the NIH study is published and after all subsequent rumored positive papers are published. However, just because we have a message to give to the public does not mean they want to hear it.
If we want the public to hear us then we need to tell the public what matters to them, not what matters to us. This is what will make the public care what matters to us.
What matters to the public is what is newsworthy, and what affects their family, friends and neighbors. How can we ever hope to win the public to our side if we are only interested in talking about ourselves?
We can hook the public with several newsworthy facts that are about them. That is how we make the public care. Journalists care about newsworthy facts. Politicians care about what effects their polls, and their support from the public. The public cares about what influences their life, and the lives of their family and friends.
Here are some of those issues the public is going to care about:
1. CFS and its link to XMRV
2. How many healthy people may be walking around carrying XMRV (4% of the population, possibly 7% of the population if we go by the Alter slide)
3. Three countries have taken the precautionary measure of banning people with CFS from donating blood, but the U.S. has not. While a lot about XMRV is unknown, just as a precaution, the blood supply needs to be protected.
Now these things don't say anything about patient care, problems with the CDC website, problems with our name and diagnostic criteria. Those are our concerns, and they are valid concerns.. But they cannot be addressed all at once, and nor will a public listen to it if they don't understand in the first place why it matters to them too.
In addressing the public, we must think first and foremost about their concern, rather than our own. We need to make ME/CFS matter to every part of society. We can't do that while we're telling the public only what concerns us.
To illustrate my point, I would like you to think of this scenario. You turn on the tv, and there is an ad about purple disease. You've never heard of purple disease before. The commercial tells you there has been a fight about the name of purple disease, some want to call it blue, others yellow. Patients with purple disease want lots of things. They want recognition. They want help. They want money for research. They want drugs to fight purple disease.
How fast would you switch the channel? How does the fight about purple disease affect you? Do you care about purple disease research based on this ad? What does purple disease have to do with you and your family? Why would you give a dollar or lift your finger during your busy life for something that does not touch your life in any way at all?
Now imagine a different scenario. You turn on the tv, and there is an ad for purple disease. You've never heard of purple disease before. The commercial disease tells you what purple disease is, and that it's been highly associated with an infectious disease. You hear other countries are taking action to make sure that the public is not exposed to this disease through the blood supply. You are told how many people may be carrying this infectious disease. You are told about outbreaks and stories about blood transfusions where people developed purple disease shortly after. At the end of the commercial you are asked to go to a website to donate and learn more about purple disease.
Do you care about purple disease now? Do you see and feel how purple disease could affect your family without ever actually using the literal words? Without being told all the issues that concern patients, does it now concern you? And now that you're concerned that purple disease is a serious thing what are you going to do? Hopefully, you are saying "yes, yes." and nodding as you read this.
Yes, we need the public to care about us. We need the public to be on our side. We need the public to run for us, walk for us, donate to research, write letters to the government on our behalf. We need politicians to move mountains.
Please ask yourself, why would the public care about our concerns if we are not putting the concerns of the public first?
We only have seconds to reach the public, before they turn the page, before they turn the channel. We live in the age of the soundbyte. Where words and entire sentences are reduced to letters. How fast do you stop looking at things that have nothing to do with you? How quick do you tune out from messages that are not thinking about your needs, or your life?
To get the public to care about us, we have to talk about their concerns as it relates to us first.
Those concerns are XMRV and the blood supply.'
Andrea Martell
Blue Ribbon Campaign for M.E./CFS
Though I don't agree that the only concerns are XMRV and the blood supply, I do think we need public relations and need to think deeply about how we go about it. I think we need to raise awareness of its affect on society such as how much it costs the economy because of all the people unable to work, also how serious it can be such as it leading to organ failure, acute pain and the number of adult ME sufferers who are dependant on child carers.
I think because we are very keen to lose the image of 'lazy yuppies' we tend to concentrate a little too much on our acheivements in the media such as how we passed exams, raised money via skydiving or whatever and set up charities as a result of our experiences. Also we only seem to concentrate on the fatuige part of our disease because its meant to be the one symptom we all have in common without mentioning the pain, dizziness or loss of muscle function
Faced with all the problems and worthy causes in need of support in the world, I do wonder, if I had not suffered and knew this disease inside out wether ME research would be top of my causes to support?Probably not... Causes such as habitat destruction, climate change which endangers us all or AIDS in Africa which kills half the population. Still people do raise money for illnesses like MS and Anerexia which aren't so common...
What do others think?
Friday, 3 December 2010
Reply to my recent compaign on XMRV
I have received a reply in response to my recent lobbying on XMRV!;
Dear Ms Amor,
Thank you for your email of 12 November about xenotropic murine leukaemia virus-related virus (XMRV) and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). I have been asked to reply.
Whilst the Department of Health agrees with the World Health Organization’s classification of CFS/ME as a neurological condition of unknown cause, it has many different potential causal factors, including those of a neurological, endocrinal, immunological, genetic, psychiatric and infectious nature, which have been investigated, but the diverse nature of the symptoms cannot yet be fully explained.
More research into the causative factors of CFS/ME is needed. The Medical Research Council (MRC) has recently identified and prioritised research topics where high-quality proposals should be encouraged. This exercise involved both experts in the field of CFS/ME and research leaders in aligned areas. Further information on this work can be found on the MRC website at www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm.
Regarding the recent interest around the role of XMRV, its precise role in the causation of CFS/ME remains a source of debate within the scientific community. A recent study in the USA reported that XMRV has been detected in a number of CFS/ME sufferers. The results of this study have not been replicated in Europe. An ongoing research programme characterising XMRV at the MRC’s National Institute for Medical Research recently investigated the basis for this finding. The study, which was funded jointly by the MRC, the Wellcome Trust and the CFS Research Foundation, failed to replicate the findings of other studies in this area and found no association between XMRV and CFS/ME.
In addition, an expert subgroup of the National Expert Panel for New and Emerging Infections (NEPNEI) met in May 2010 to consider all available evidence about XMRV and conduct a risk assessment. The subgroup concluded that XMRV can infect humans but there is currently no evidence that it causes human disease and that, on the evidence before the group, no public health action is required at this time. Since the subgroup meeting in May there has been no new scientific evidence that would change these conclusions. In July, the Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO), similarly decided not to recommend further measures at present. Both groups will continue to monitor the situation.
Both NHS Blood and Transplant (NHSBT) and Health Protection Agency (HPA) experts concur with the views expressed by NEPNEI and SaBTO and also recognise the need for further research on the prevalence of XMRV in the UK. In a recent unpublished pilot study conducted by NHSBT/HPA, a series of 540 randomly selected English blood donors were screened for XMRV and none were found to be infected.
The UK Blood Service’s decision to exclude people with CFS/ME from donating blood is to protect the patient, not because of any potential infection risk. CFS/ME is a relapsing condition and blood donation may be detrimental to the affected person. This decision is in line with practice for other conditions where individuals are permanently excluded from blood donation to protect their health.
I hope this reply is helpful.
Yours sincerely,
Jonathan Tringham
Customer Service Centre
Department of Health
Be interested on other peoples thoughts on this E-mail
Dear Ms Amor,
Thank you for your email of 12 November about xenotropic murine leukaemia virus-related virus (XMRV) and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). I have been asked to reply.
Whilst the Department of Health agrees with the World Health Organization’s classification of CFS/ME as a neurological condition of unknown cause, it has many different potential causal factors, including those of a neurological, endocrinal, immunological, genetic, psychiatric and infectious nature, which have been investigated, but the diverse nature of the symptoms cannot yet be fully explained.
More research into the causative factors of CFS/ME is needed. The Medical Research Council (MRC) has recently identified and prioritised research topics where high-quality proposals should be encouraged. This exercise involved both experts in the field of CFS/ME and research leaders in aligned areas. Further information on this work can be found on the MRC website at www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm.
Regarding the recent interest around the role of XMRV, its precise role in the causation of CFS/ME remains a source of debate within the scientific community. A recent study in the USA reported that XMRV has been detected in a number of CFS/ME sufferers. The results of this study have not been replicated in Europe. An ongoing research programme characterising XMRV at the MRC’s National Institute for Medical Research recently investigated the basis for this finding. The study, which was funded jointly by the MRC, the Wellcome Trust and the CFS Research Foundation, failed to replicate the findings of other studies in this area and found no association between XMRV and CFS/ME.
In addition, an expert subgroup of the National Expert Panel for New and Emerging Infections (NEPNEI) met in May 2010 to consider all available evidence about XMRV and conduct a risk assessment. The subgroup concluded that XMRV can infect humans but there is currently no evidence that it causes human disease and that, on the evidence before the group, no public health action is required at this time. Since the subgroup meeting in May there has been no new scientific evidence that would change these conclusions. In July, the Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO), similarly decided not to recommend further measures at present. Both groups will continue to monitor the situation.
Both NHS Blood and Transplant (NHSBT) and Health Protection Agency (HPA) experts concur with the views expressed by NEPNEI and SaBTO and also recognise the need for further research on the prevalence of XMRV in the UK. In a recent unpublished pilot study conducted by NHSBT/HPA, a series of 540 randomly selected English blood donors were screened for XMRV and none were found to be infected.
The UK Blood Service’s decision to exclude people with CFS/ME from donating blood is to protect the patient, not because of any potential infection risk. CFS/ME is a relapsing condition and blood donation may be detrimental to the affected person. This decision is in line with practice for other conditions where individuals are permanently excluded from blood donation to protect their health.
I hope this reply is helpful.
Yours sincerely,
Jonathan Tringham
Customer Service Centre
Department of Health
Be interested on other peoples thoughts on this E-mail
Friday, 26 November 2010
Current ME campaigns
Any improvement has also been hampered by my sudden complete loss of faith in my sleep pattern. Its alright most of the time just when I'm planning to do something special like, for example, last Saturday I planned to go on a badger workshop and I want to be at my best I suddenly become terribly afraid I'm going to sleep badly which of course stops me getting to sleep
After my cold I had to start building up my tolerence of the infra-red cocoon all over again. I'm now back to being able to use it for as long as before ( 6 mins) though happily. I'm on the full dose of Naltrexone too, 4.5 ml, compared to 1ml when I started. I was very worried when I first caught my cold that my sicky feelings were side affects of my treatments so at least its one small releif that it wasn't.
XMRV; XMRV is a newly discovered retrovirus, related to HIV, that is thought to cause cancer. It has been found in a high proportion of CFS/ME sufferers, according to a study in America. Subsequent research trials in Europe though haven't found XMRV in many of their research subjects, leading to debate, but this could be to do with the differences in diagnoses in the two countries; America has a much stricter (and possibly better) diagnosis criteria than Europe
America is also doing a much better job of dealing with XMRV. It has commisioned top pathogen hunter Dr Ian Lipkin to carry out further XMRV research whilest the UK officials have merely stated "no public health action is required at this time". It is thought to be transmitted by blood so contaigan could spread through blood transplants.
I think leaving it untill a crisis comes up is a bad idea so have been joining in a campaign to lobby the UK government to take action
"I'm sending this E-mail to express my concern at the government
decision not to undertake research into XMRV as a current priority.
XMRV is a retrovirus, related to AIDS and lukemia. Research suggests
that it could be involved in causing both cancer and ME, common
illnesses in this country. I know these are tough finacial times but I
think the governments decision not to take XMRV seriously, RIGHT NOW,
could have terrible repercussions in the long term"
This is the message I repeatedly sent Andrew Lansley, Secretary of State for Health, Sally Davies, Chief Medical Officer at the Department of Health and John Savill, Chief Executive of the MRC most days for about a fortnight. Though I don't think XMRV is the whole answer to the underlying cause of ME I think all avenues should be explored
Worldwide petition to get access to secret ME/CFS files; This is another campaign I've championed recently. It was started by Dr John Greensmith @ ME free for all whom I'v had reason to talk to in the past. The secret files are held by the Medical Research council and will currently not be available to the public till 2072
For more infomation and if you wish to sign it click here http://www.thepetitionsite.com/264/--if-gte-mso-9xml-wworddocument-wviewnormalwview-wzoom0wzoom-wpunctuationkerning/
I beleive that with so little infomation currently around on ME, anything that is there should be open for people to read and learn from
http://www.mefreeforall.org/index.php?id=1
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