#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

ShareThis

#124- APA Bullying RE: DSM5 Watch site.

Please note that Suzy Chapman's blog, DSM-5 watch, has moved to
http://dxrevisionwatch.wordpress.com/.
The reasons are Orwellian, Suzy says here http://www.psychologytoday.com/blog/dsm5-in-distress/201201/is-dsm-5-public-trust-or-apa-cash-cow

"Until last week, my website published under the domain name
http://dsm5watch.wordpress.com/ .

On December 22, I was stunned to receive two emails from the Licensing and Permissions department of American Psychiatric Publishing, claiming that the domain name my site operates under was infringing upon the DSM 5 trademark in violation of United States Trademark Law and that my unauthorized actions may subject me to contributory infringement liability including increased damages for willful infringement. I was told to cease and desist immediately all use of the DSM 5 mark and to provide documentation within ten days confirming I had done so."

"Given my limited resources compared with APA's deep pockets, I had no choice but to comply and was forced to change my site's domain name to
http://dxrevisionwatch.wordpress.com/.

Hits to the new site have plummeted dramatically and it will take months for traffic to recover - just at the time when crucial DSM 5 decisions are being made."

Please spread the word.
***
PS: added by a friend:

Will the APA please recline on the couch?

When I attempt analysis of a situation or occurrence, I include questions like; ‘how else could things have gone’ or ‘how else could x have behaved’. Seeing alternatives often highlights the choices that have been made.

The APA letter to Suzy Chapman (see http://dxrevisionwatch.wordpress.com/) appears to be written in legalese to my untrained eye, so it may have been written by a lawyer acting on behalf of others. Therefore the wording of the letter does not give clues about motives or processes. The fact that it is legalese and is threatening does give information.

How else could it have been done? Perhaps a friendly email from someone asking if Ms Chapman would mind corresponding or having a telephone conversation about her website may have been an option. Or if more purposeful action was thought appropriate, a letter could have requested changing the domain name and pointed-out that the current name infringed copyright. It might have been nice if the APA had offered to compensate Ms Chapman for any costs and inconvenience incurred in helping with their request.

In other words, a collegial and civilized approach was feasible and threats and other heavy-handed tactics could have been saved for a last resort. They were not.

Therefore it appears that a choice was made to be heavy-handed. A major organization versus an independent citizen. It looks like bullying from any angle.

The APA are fussing about anyone using their branded ‘DSM’ name. Naming a thing is always symbolic of understanding something about its nature. Renaming is indicative of change and therefore changing its nature. This results in loss of the old identity. That the APA is in some respects reinventing itself with DSM-5 seems quite likely. The comfortable old identity, partly bound to DSM-IV is being lost so the organization is thrown into uncertainty. Rather like a person experiencing a significant change of role. They may be excited by new possibilities but at the same time feel the loss of the old way of being. This can lead to insecurity and any challenge to the identity – old or new, is felt acutely.

So here is an organization which represents perhaps the stodgiest of all the health specialities, conservative, authoritarian and awkward in relating to others that is having an identity crisis during its transition from DSM-IV to DSM-5.

Little wonder they are behaving somewhat hysterically as they appear to be in neurosis. The longing to cling to the known and trusted good-old-ways seems to be in conflict with the desire to modernize, get hip, and start relating to the real world rather than living in the deep and cosy recesses of its own bottom. The good-old-days when patients did what they were told and didn’t answer back are gone. The times when a few highfalutin 4 syllable words daunted commentators is past. It’s a brave new world.

Take heart APA. There is a valued place for psychiatry and psychology in this frantic modern world (as I hope my light-hearted ‘analysis’ shows).

Change will happen. Try to identify the unavoidable losses and make them a conscious sacrifice. Be accepting of uncertainty about who you are and what you are for – you cannot completely control these; only discover them on your journey into the future. Try to avoid imposing your own fears on others along the way.

Permission to Repost.

ShareThis