What is it like to have severe ME? Emily's story

 "Severe ME is utterly devastating. It's time for proper research and proper care". That is the simple, but vitally important message that Emily is desperate for the world to hear. Beginning months ago, she has written a letter which she ho...pes will spread her message across the Internet and garner support for those severely affected by ME. Please help her achieve this.
 
(Permission to re-post)
 
Emily's Appeal
 
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.
 
"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
 
You can support Emily and everyone with severe ME by joining the "Severe ME/CFS: A Guide to Living" Facebook group http://www.facebook.com/group.php?gid=114380158590669. Both sufferers and non sufferers welcome! See also www.severeME.info

A very much needed commentary from Craig Maupin

I have been fairly quiet in the last month dealing with health issues and stressors that all patients with this illness encounter. However I could not skip this commentary from Craig Maupin, I think it is just and it is important for all advocates of our illness to read. I hope that each one of us take a look at the impact we are leaving behind us. 

Our Advocacy:   Lasting Damage Done, 

Despite the Best of Intentions

            By Craig Maupin at http://www.cfidsreport.com  

In the cinematic realm, good intentions are always rewarded.   Real life is less forgiving than cinema. In real life, a poor strategy may be well-intentioned, but such strategy may still hurt vulnerable people --deeply and irrevocably.

Several actions by a small minority of the CFS community are hurting vulnerable people.    Like most strategies, their actions may be well-intentioned.  Through their efforts, this minority may feel an emotionally cathartic release and empowerment.   Yet, the best of intentions won't keep counterproductive strategies from hurting families affected by CFS -- all of us.

I love this community.   Like each of us, I have suffered and experienced great loss as a result of this biomedical illness.  But counterproductive efforts compound that loss.   To stand by and say nothing is to idly watch damage being done.

What strategies am I speaking of?

1. Verbal abuse and anger-fueled interactions with the scientific community.

This illness will never be defeated until we forge positive relationships with the scientific community. Period.   A solution will not come any other way.

For every bridge burned or researcher incited, lasting damage is being done to families and children suffering from this disease. I am deeply concerned that the roving bands of internet advocates extending, rather than alleviating, the suffering caused by this disease.

2. Unreasonable demands and heated interactions with journalists.

Solid journalists must tell more than one side of a story. Objectivity should be their job.

A few weeks ago, the professionalism of a journalist who has been fair in her coverage of this disease was harshly criticized. It didn't surprise me that her next article seemed to subtly portray those with this illness in a different, and harsher, light.

Like my aforementioned concerns about interactions with the scientific community, burning bridges to journalists will extend and entrench public attitudes behind the suffering of those with this disease.

3. Patients acting as 'laymen virologists', passionately engaging the scientific community.

I have felt this disease's full impact. As a result, I am absolutely, 100% confident this disease will have its day. I say that with no hesitation.   A virus or immune defect is a reasonable explanation for the subgroups of CFS patients with a viral onset, high titers to various viruses, and abnormally expressed cytokines.

That said, those 'laymen virologists' who are passionately combative with the virology and scientific community online are creating poor perceptions of people with CFS and stifling curiosity about the illness. Sufferers of CFS desperately want hope. But a passionate desire for hope should not cause us to overlook the qualifications needed to engage complex virological topics, without losing our credibility.   The scientific community undeniably knows the difference.

These heated engagements make it less likely that sympathetic researchers will establish cooperative relationships and successfully challenge attributions blocking progress. Published research by credible scientists is the best way to change perceptions about this disease.    Laymen debating scientists -- on our behalf --will have the opposite effect.

4. Mass letter campaigns

Given some of what I am seeing written on behalf of those with CFS on message boards and blogs, I am very concerned that mass letter writing campaigns are a counterproductive strategy.   I'll leave it at that.

Anger is often a byproduct of loss and suffering, and the CFS community has seen its share.   But rather than let anger and passion guide our decisions, each advocate should consider the long-term effects of their efforts.   If our efforts are not creating collaborations, do not build trust and confidence in our community, and fail to portray those with CFS in a positive light, families affected by CFS will harmed.   The harm done may last decades.

Harmful and permanently damaging strategies may stem from very real problems.   Unfortunately, much of the scientific community's history with this disease has been sloppy and disinterested. Science is often a human consensus, and we are naive to think that consensus is not influenced greatly by gender attitudes, cultural beliefs, professional environments, and language.   But trust, relationships, and credibility must be built over time, if we are to change perceptions.   Our history is no excuse to deepen our problems.

These four strategies (listed above) are not helping those with CFS.   Rather, they are reinforcing and entrenching negative perceptions of CFS - -and hurting people in the process.    In the last six months, what I have seen on blogs and forums -- often purported to be done our behalf -- is extremely disheartening and discouraging to me.    Lasting damage is lasting damage, even if done with the best of intentions.

　Articles on the CFS Report may be copied and posted to forums and other sites. 

Craig Maupin may be reached at editor@cfidsreport.com