#125~ ME/cfs: Emily's Last words ~ RIP

Well folks, That "Invisible Illness" ME/cfs has just claimed another loving soul.
Another that fought long and hard and did her share of Advocacy..
Please share this with as many as you can that think this illness is STILL "All In Our Heads."

RIP~ dear "Emily Rose Collingridge" 1981-2012

Maybe something will make them finally realize that this could be their friend or daughter or son or grandson..... NO ONE is exempt.

May 12th, our 20th Anniversary of Advocacy is coming soon....
Please speak to your local Support Groups and make plans NOW.
We can NOT sit still any longer or again..

Please ASK your friends to HELP if they care for you "at all."
Other illnesses have "Walks" done by friends and families...
WHY Won't OUR's do the same ???

ASK THEM WHY ???
After they read this.... Thanks.

******** 
Emily's mother Jane has asked for these last words from Emily to be reposted. They were written over many weeks – while her daughter still had the strength in her body to do so. Please repost as this is Emily's final wish.

Jane Collingridge: "It has been said that the following is hard to read. But that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it"

Emily’s Appeal:

“My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old.
In April 2011 I turned 30.           I still have ME.
ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease. My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion.

If you met me you may well think I was about to die now – it’s like that every single day. After all these years I still struggle to understand how it’s possible to feel so ill so relentlessly. My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor’s visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I’ll go mad with the suffering. Of course it can also be as bad as this for no particular reason – and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music – the list is long.

ME has made my body an agonising prison. My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I’m on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable – this despite pain levels so high that I hallucinate.

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration. Many days I feel utter despair. But, unlike some sufferers, over the long years in which I’ve had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going. My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong.

As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me – severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for – but I don’t. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it.

This is something that must change. And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:

Please put an end to the abandonment of people with severe ME and give us all real reason to hope.” By Emily Collingridge 2010-2011

Thank YOU for taking the time to reading Emily's "Last Wish."

May you HEAR some of her heart thru her words and know that
there are over 17 million people with this "Invisible Disease" that has
now been ignored for 3 generations, and our Memorial list is Way TOO LONG.....

NOT ALL DISEASES "ARE VISIBLE," but that doesn't mean they are not REAL.

http://www.severeme.info/about-emily.html
http://www.blogistan.co.uk/blog/mt.php/2012/03/20/emily-rose-collingridge-1981-2012

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#105 ~ The Transforming Faces of the CAA

The Transforming Faces of the CFIDS Association of America

Posted on March 1, 2011

Guest blog: RePosted with Permission of the Author :
by John Herd

In the early years of the CFIDS Association of America (CAA) the organization was a dynamic organization, doing its best to represent and help patients.

As Kim McCleary became more entrenched in the CAA, taking over increasingly more control of it, their [her] advocacy still began to change. Instead of acting as a diplomatic advocate trying to make advocacy headway with government officials and agencies, her actions and statement about health department activities and/or lack there of were becoming increasingly anemic.

Effective diplomacy is one thing, but increasingly respected advocates and informed patients were talking about McCleary being “in bed with the health department.”

At the same time it was becoming increasingly evident that (A) McCleary was not willing to work collaboratively with other CFS organizations or advocates, (B) that the CAA was no longer interested in providing any kind of services to aid or assist patients, and (C) that the CAA’s actions were all about what was economically best for the CAA, in McCleary’s mind.

McCleary was consolidating her power within the CAA and in the governmental CFS arena. She made a point of selecting various CAA board members who would accept her views about matters and back her up. So too was she making sure she had an inside track to health department committees and officials while doing nothing to assist other advocates, activists or patient organizations with advocacy initiatives. She was not what one would call a team player, unless of course the team one is referring to is the health department.

A high level health department official when speaking to a group about a CFS advocacy said, “When (_____) speaks (this person) speaks for the patients; when Kim speaks she speaks for her organization.” That clearly defines what McClearly has been about.

Due to personal matters the founder of the CAA, Marc Iverson, had less of a hand in running the organization. Additionally, McCleary had consolidated so much power on the organization’s board that Marc found he had diminished influence upon getting the organization back on track. Marc had his ideas about CFS advocacy and helping patients, McCleary had hers, and the differences were vast.

I can not reveal the details because they were shared in confidence, but the internal wrangling within the CAA got very ugly. Marc eventually composed a resignation letter and left the organization.

In 2004 Jon Sterling, who had become the CAA’s Chairman of the Board and several other people resigned for similar reasons. What lead up to that event seemed like a tactical carbon copy of the playbook used against Marc Iverson. Again the conflicts came down to doing what would most effectively be representing and acting on behalf of the CFS community or following McCleary’s strategies for building CAA’s sphere of influence with the health department.

McCleary’s style of impotent advocacy was taking a profoundly negative toll on the organization’s membership roster and donations to the organization. The organization’s excuse for declining membership was that much of the information it had once furnished was now available on the Internet. That excuse was nonsense; people did not feel the organization was adequately representing them.

The CAA had never made enough money from membership funds to run the organization, and clearly not enough to fund the large salary McCleary wanted for herself. She desperately needed a revenue stream and the answer was health department contracts.

For those of us in the CFS advocacy trenches that immediately reeked of conflict of interest and we said so. Given the CAA’s economic dependence on those contracts the CAA was not about to bite the hand that fed them. The messages coming from the CAA increasingly sounded as if the health department had written them. The CAA had become the CDC’s puppet.

When it became clear to McCleary that the CDC contracts were ending she needed to find a new revenue stream. Since the contracts were ending anyway she made the tactical decision to distance herself and the CAA from CDC with a series of critical statements about the CDC. Such distancing was important for her next metamorphic transformation of the CAA, that of becoming an administrative medical research network.

The CAA brought on board Suzanne Vernon from the CDC to act as their Scientific Director.

Having read the CAA’s “Research Grants Program, Request for Applications” http://www.cfids.org/profresources/2008rfa.pdf and the CAA’s “Research Grants: Guidelines, Guidelines for Conducting CFS Research Studies” http://www.cfids.org/profresources/grants-guidelines.asp it was evident that McCleary and Vernon were trying to make the CAA an administrative medical research network.

Cort Johnson, the most outspoken, ardent supporter of the CAA immediately was highly critical of me when I publicly pointed this out. He said there was no evidence to support my analysis of what the CAA was doing.

When one CFS advocate not long ago referred to the CAA as being an advocacy organization to an NIH official, she reportedly was immediately corrected by the official that the CAA is not an advocacy organization, they are a research organization. The official most likely would not have stated that if that were not the way the CAA were portraying themselves.

It would not surprise me at all to see the CAA eventually applying for government funding directly, and if need be changing their incorporation type in order to do so.

So here we are today. The CAA was not only luke warm at best about the Whittemore Peterson Institute’s (WPI) XMRV findings, they have reportedly been very aggressively speaking and acting behind the scenes to blackball WPI from meetings, government committees and grant funding. The only logical conclusion one can draw from this is that the CAA views WPI as a research competitor. For this advocate, I have far more faith in the WPI and the medical network they have been forming than in the CAA and whatever directions they wish to steer CFS research.

I do not feel the CAA is adequately representing the bests interests of the CFS community as an advocacy organization or a research organization. The vast majority of those I speak to do not want the CAA to convey that that they are representing us when they are not doing so. While a small number of people have been critical of our speaking out about this, claiming we need the CAA because they are the only national organization, my position is that having no organization is better than one that is doing harm. If the CAA went under that may clear the way for patients to get behind creating the kind of advocacy organization we need and getting the kind of support and funding the WPI needs.



© John Herd, ’11
johnherd@johnherd.com
Original Article 

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