The Hummingbirds' Foundation for M.E.

Aylwin Catchpole (also known as Jennifer Catchpole), a long-term M.E. patient, died suddenly on Friday August 6th 2010.

Aylwin was a very special person to many of us and will be greatly missed. This page has been created for her friends and loved ones to pay tribute to her and just generally explain to the world how wonderful and amazing she was. It is also hoped this page will bring some small measure of comfort to her beloved children, Kathy and Pablo.

Aylwin Catchpole has suffered from ME for over 21 years.

Most would agree this qualifies her as an 'expert' on this subject.

Prior to becoming ill in 1986, she pursued studies in Nursing and Psychology, before starting her family. She lived much of her life in Vancouver, Canada. She became an activist in Women's Health issues, lobbying for legalized Midwifery and safer birth practices. She also became a Teaching Associate with the University Of British Columbia School Of Medicine, instructing medical students about the particular issues of women's health care and physical examination techniques.

Suddenly, one day she became ill. Her children were 3 and 5 years old; she was a single parent. Naturally, she couldn't just "go to bed" for the next two years, which was the only recommended treatment at the time. She did the only thing she could do: soldier on. She provided care for her kids, while working to figure out the mystery that had taken over her life.

It took her doctor 8 months to figure out that she did not simply have the flu. She was first diagnosed with "Chronic Epstein Barr Syndrome" (a common understanding of ME at the time). She eventually received a diagnosis of ME in 1990, years after the initial onset of the disease. 

As Aylwin (pronounced: "all-win") found the information about ME that she was searching for, she again took up the mantle of activist, developing a system of 37 support groups in her home province of British Columbia, Canada. She became the front-line phone contact person for desperate and confused members of the public who had fallen ill with the "Mystery Disease". She developed and provided educational seminars for Public Health Nurses, Women's Health Networks, and the public at large. 

Helping others discover and understand this mysterious affliction is not new to her. She's done it for twenty years.

She organized two medical symposia, bringing top international experts to B.C., to educate local doctors about ME. She was interviewed on multiple occasions for both radio and TV; and appeared as the spokesperson for ME advocacy in newspaper and magazine articles. Additionally, she published her own writing on the subject.

Then, one fateful day, when her son was only ten, he too suddenly became ill with ME.

He became bedridden overnight. Instantly, he lost two years of Math! After the intense frustration of consulting with multiple doctors – who didn't understand what was wrong with him – she was able to get him to an ME specialist who diagnosed him. Armed with a doctor's letter, she was able to withdraw him from school and allow him the total rest he needed.

Unlike her, he recovered in three years, by age 13. She attributes this to having provided him with appropriate care, care she herself had not received.

At that point, she decided to move away from city life. She realized that air pollution and other toxins were negatively impacting both mother and son's possible recovery.

She was so ill that she was no longer able to care for her children. She had to send them to live with their father. They moved to a nearby rural island as well.

Aylwin then developed Anaphylactic (or life-threatening) allergies to almost all foods and many other substances. She could only eat only white rice and chicken...for 5 years. Moreover, she also developed Hyperthyroidism, which tricked her into thinking she was getting well...until she crashed from it within months.

For many years now, as her health allowed, Aylwin has sporadically published numerous articles about ME and other subjects, in both magazines and newspapers. She has been a staff writer for four newspapers. Additionally, she became an Alternative Professional Advisor for ten years; educating people about Health, Creativity, Relationships, and other life issues.

Unfortunately, two years ago, she suffered what she called a "mega-relapse", brought on, as it turns out, by toxic exposures and a fungal co-infection.

Again overnight, she lost the ability to read or write, drive or walk. She felt substantially "drunk" for about 18 months. She became totally housebound, needing a caregiver for any trips to the doctor or other necessary expeditions, shopping, and housework.

She took up the use of a wheelchair, cane, and knee braces for minimal mobility. She developed a "Nonspecific Inflammatory Arthritis" and a new 'seizure-like activity' she has named…" life in hell."

However, on the plus side, with judicious application of alternative healing techniques, nutritional supplementation, and prescribed medications, she is now beginning to improve (again); although she remains largely housebound.

Without these improvements in her cognitive status, she would never have been able to write this article. She began to research ME with renewed determination after her relapse. Now she is indeed fortunate to have access to the Internet from her home. This is a vital tool in her life.

Aylwin has developed a special interest in late-stage ME and Severe ME; and has extensively researched these aspects. She is also interested in other chronic immune/inflammatory diseases, and the connections between them.

She believes that scientific research data needs to be converted into accessible and practical information for ME survivors. They desperately need to use this information for maintenance and survival in their everyday lives.

Providing such research findings, distilled down into practical and understandable tips, techniques, resources, groups, and 'how to' information, is Aylwin's continuing passion in life.

Aylwin was very firm in her views on M.E. advocacy and that M.E. is NOT 'CFS' and should be separated from 'CFS' and that M.E. should never have been falsely 'rebranded' as 'CFS' or 'ME/CFS' by vested interest groups, and so on.

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I am a ghost in the land of the living - forgotten, ignored and drifting on the edges of life, whispering my message in the ears of the lucky ones who can participate in life and community. But they don't hear me. And mine is all too often the fate of those of us existing with a disabling chronic illness. I have M.E., or Myalgic Encephalomyelitis, that most ridiculed entity, downgraded to something called Chronic Fatigue Syndrome by most of the medical profession.

I call it paralysis, muscle and cardiac failure, brain injury, a living plague that kills only slowly but does kill, that has planted me on the sidelines of life, incapacitated and waiting for the Telethon, Walkathon, ANYthing-a-Thon in recognition of this insidious and infectious plague that has rendered millions worldwide house and bed-bound. I get so jealous when I see the pink-clad hordes out supporting others, who already have better support than I can ever hope for.

Why don’t I organize my own Thon? Well, if I can manage to get up, wash, cook, and so on, that means it’s a good day. I need a caregiver for everything else. Once an activist in multiple areas, my disability has progressed to the point of only allowing the most essential of activities for the maintenance of life. And there are those more ill than I, so ill and weak that to turn over in bed, with help, is a major accomplishment with a steep price.

It happened in the Eighties, this new cycle of the Plague, though many cycles preceded. Once it was seen as a side-epidemic to Polio outbreaks - similar, and yet not quite Polio either. That disease too was considered “hysterical” until the causative mechanism was found, along with MS, Lupus, and Parkinson’s… so much chronic illness, so easily dismissed.

But in the Epidemic outbreaks in the eighties, a new crime was committed. Against all good sense and the protests of long term M.E. researchers, a new moniker was invented, designed to promote ignorance, belittlement, and dismissal of those of us who not only had to battle the disease itself, but the attitudes that the silly name, Chronic Fatigue Syndrome, engenders.

So all we millions who do have the neurological disease M.E. have been “disappeared”, rendered invisible and treated as if we don’t exist. In most places, one can’t even get a diagnosis, let alone proper treatment. We are the ghosts in the medical machine, unacknowledged, unseen, floating untethered, abandoned by doctors, and for many, by friends and family too.

Not much has changed in the intervening twenty years. M.E. is an invisible illness so like those others. You cannot see evidence of it upon the body of the afflicted, unless you have very sharp and compassionate eyes and ears, which pick up the shaking, the pallor, the mental confusion, the abnormalities of speech and memory. And the medical mish-mash that has ensued has left everyone confused, most doctors no exception.

Relative visibility only comes when the inevitable aids come out, the canes, braces, scooters and wheelchairs, and even then, I am treated like I don’t “deserve” to use such devices because I “only” have “CFS”. But those of us with M.E. also become invisible because we are largely or entirely stuck at home, stamina too impaired to even go out to use those devices.

When I do get out the door on one of those very best of days, I am so often not even recognized by those who once knew me. Their eyes slide right over me, whether from discomfort or simply because I have been forgotten I cannot know. I float around our tiny downtown for a little while, mentally impaired with the effort, neither seeing fully nor being seen, a ghost in my own community.

I do think that the simultaneous rise of AIDS at the same time as the 80's US ME epidemics sucked the life out of any possible attention by public health towards ME. It is so hard to talk about because AIDS is a TERRIBLE disease but they got the funding and the recognition and research because it was a very powerful, large, population group here in NA, well used to activism, and BTW, men, at least in the early days. And just look what has happened for PWA's, all the research and progress, all the social support and awareness. There's quite a strong AIDS group here. I found out that a woman I know with it, who has a husband and kids, who functions as healthy running around all over the place, and who gets substantial caregiver hours. And here I am, unable to do my own shopping or housework and can't get one lousy hour. And one can never talk about it, it's not PC <sigh>.

I do not begrudge them their care etc. but only wish for 1-1/0 of the help that they get (or that those with MS get). And it pisses me off, that so many lesbians worked so hard on behalf of men with AIDS, fought the battle side by side for many years, but the men do not return the favour for lesbians with ME and other immune diseases, in which community they are rife.

And PWA's (the people I know in this community anyway) are just as likely to look upon me as crazy as anyone else <sigh>. You'd think they'd get it, but no.

Aylwin, M.E. patient 20+ years (Canada)

 

I actually walked away from mainstream medical care about 15 yrs ago out of utter frustration. Now I am having another "go" just to try and obtain any help that might be had. And my perception is that it's worse now. And my patience is running out. again. I almost wish I could be MISdiagnosed with MS or other, more respected disease, just to get better treatment.

Aylwin, M.E. patient 20+ years

 

I had those same "bright matter hyperintensities" in my MRI that we know are part of M.E.…but they were considered ‘insignificant’ because of having this silly disease, even though they are virtually identical to the ones seen in MS and other neurological conditions.

Aylwin, M.E. patient 20+ years

Hate to say it, but the only folks I know who have MS worse than we have ME are two women with the galloping progressive rapid kind, who are in wheelchairs & care, but they won't live much longer. But everyone else I've ever known with MS can run circles around me!! No offense to anybody, I have known people with MS, Lupus, Lyme, AIDS (not just asymptomatic HIV) and all kinds of other similar conditions, and to a one they can all run circles around me...until it's time to die that is. (Then they are more disabled than us, but only then). <sigh>.

Aylwin, M.E. patient 20+ years

 

Email to fellow group member about coping with M.E., from Aylwin (long-time M.E. patient) November 2009

 

Coping with M.E. is a very fine balancing act. I think one trick is not to project into the endless future, it is totally overwhelming. As none of us really knows what will happen, you may well get real improvement over time. One day at a time is best. (When I'm feeling blue I remind myself that it's just a feeling I'm having right now.) Also, I take immense pleasure now in the tiniest things, seeing a bird through the window, a streak of sun on the trees, a funny joke. I'm lucky that I can watch some movies & more or less follow along, though I have no access to TV.

 

And it may be that you are not up to contributing, but I find a lot of relief & enjoyment hanging out & interacting here where we all understand. If you were able, it really would help you feel less isolated. In fact, I do most of my socialising online now & find it much less impactful than in-person or phone. It's just a different way.

 

As to meaning, well each of us works on that one (human being not human doing), but I suppose my spiritual beliefs have helped me there. We many not understand fully now, but some happy day we will (no not a Christian but do believe in meaning, afterlife etc.). I have my ideas about it.

 

Anyway the majority of people in the world live in terrible circumstances, hungry, homeless, horrible violence, & I think us "first-world"-ers have been led to expect safety & happiness through some obscure virtue, when most do not have those silly expectations that life will go just as they want it to. Life is hard however you slice it, & I do not know one person who has not had major grief, illness, or other disasters to deal with. How is just the luck of the draw is all.

 

Cancer is also terrible, yet they get the red carpet of the latest treatments, counselling, & lotsa public recognition, parades even, while we languish in the backwaters of medicine, virtually ignored <sigh>. I think that makes a big difference as well. Again, here is a remedy, & I am so glad that at least you did get to see Dr. H & have that validation.

 

I think of the Kubler-Ross stages of grief & I must say that I feel I've mostly, finally reached the stage of acceptance. It is what it is. Although I am also not a Buddhist I find some of the philosophies very helpful. A good author (if you could handle books on tape, I think hers are all available) an excellent writer is Pema Chodron, she has brought me so much comfort, especially *When Things Fall Apart* (Heart Advice for Difficult Times), though she also has one called *The Wisdom of No Escape* I'd love to read. She writes in short, simple essays which helps. BTW someone recently told me that she suffers from poor health that is very limiting too.

 

I have been through that discouragement & sense of hopelessness so often in these 23 long years. My heart does go out to you & though there are no big answers I hope these wee tips can help just a tad.

 

 

 

All of us here have been through the doctor crap, all of us here have been through the terrible dilemmas of work & school & trying to keep up with the life we had & chose before

 

... but I have to reiterate what Jodi said in another email...if it is ME & you continue to overdo, you may well end upsooooooo much worse than you are now. It happened to Jodi, it happened to me, this determination that we are suffused with in our culture of soldiering through & mind over matter & good people get well...& then we do "fight the good fight"...& with this desease the price is very, very high & can be permanent. Hate to be a harbinger of doom, I know it is hard to imagine being more ill, but you do have an opportunity here to avoid our fate. Hard choices I know. TC,

Aylwin xox

 

 

 

And I echo what Sarah said...we veterans of often no-diagnosis (or like me, once properly diagnosed but since, that has been ignored & ridiculed by docs who have been brainwashed by the CFS/Somarisation model.) have made all these mistakes & are paying for them for the rest of our lives. Modern society forgets that one of the most essential treatments for illness in general is REST. I was a single parent when I got ill, of two toddlers, so I didn't have much choice. Now I have no life left but survival with dubious assistance. Do you know the average age of death of PWME is 25 years shortened from normal. This is your LIFE. We all utterly understand how impossible it seems to find a way to just stop your present life & dreams, only to put on hold for awhile, and of course there is the matter of finances. But if you think things are hard now, you cannot imagine the hardship to come if you do not try to find a way. I do realise that you may not have ME (though it sounds like it to me, not a doc but with 23 years of this under my belt) & must continue to push for a diagnosis, but meanwhile it is the rest of your life we are talking about here.

The only dire comparison I can come up with would be, if your partner had AIDS, would you not wear a condom? In a way it's worse because people with AIDS get excellent medical treatment & all kinds of support - most of us with ME don't. Sorry to be harsh but we truly want you to have the chance we never did - to get WELL again.

Blessings, Aylwin xox

I will miss you so much Aylwin..... this is such a shock but I am glad you are finally at peace.

You were a member of the two M.E. chat groups I run and you were to a large extent the soul of both of them... I don't know how we'll go on without you, it just wont be the same. You were also so wise and kind, and giving of yourself....and funny!

You were also so wonderful about M.E. politics and really 'got it' but also presented your views in such a kind and matter-of-fact and patient way. I wish we'd had more like you...

You also posted many times about how hard your life was, at those times when you were finding it so difficult just to get through the day and just had to vent a little... I wish so much your life hadn't been so difficult. But it was...and so I am glad at least that your suffering is ended.

I'm sure everyone who knew you would agree, you were one in a million and such an amazing and inspiring and wonderful person. You continue to inspire me.

With love from Jodi Bassett, Australia

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Aylwin,

One of the most beautiful people I have ever met, and certainly the wisest. We will miss her horribly. She gave me my most favourite saying - 'As useful as a chocolate teapot'. It makes me smile to think about it, which is probably what she would have wanted. So Aylwin I farewell you with sadness, but remember you with a smile.

love always, ness (Australia)

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I didn't have the opportunity to meet Aylwin, but since (from her bio) our lives have been parallel in so many ways, I can easily imagine what she's been through.

However angry I may be with all the shit she had to endure, and especially the opportunities she didn't get, I am glad she's not suffering anymore.

No More Pain, Aylwin.

Clytie Siddall (Australia)

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I knew you only through the currents of the internet, but you touched my heart. I always looked for your thoughts and comments, and was always so happy to share links and all sorts of things on FB. I felt a kinship with you - sharing your love of animals, pagan ideas/beliefs, some Buddhist philosophies. I felt and feel so grateful to you for being supportive and especially for being supportive toward Josie, my daughter. I wish I had gotten to know you better, and I wish I had told you that I fantasised about offering to have you come here to live with us, so I could care for you. Anyway, I miss you - but am glad you are no longer struggling and suffering. I will sign off, as always ... xo Jayne (Australia)

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Aylwin-I only knew you as a friend online but the news of your death shocked and made me sad.  Your comments on ME were both informative and no compromising.  You respected the views of others and you were always polite and had a great sense of humour.  You have touched the lives of many and the wisdom you shared with others have helped many with this devastating illness.  May you at last be at peace. Christine White.

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To write a comment for this page, please visit the Guestbook page. Any comments posted there about Aylwin will then appear on this page. All friends of Aylwin's are welcome to post, members of the M.E. community and all her other friends and loved ones alike.

(If possible and where appropriate, please use only the correct terminology/concept of M.E. - out of respect for Aylwin's views, thanks.)

A lending team in Aylwin's name has been set up at www.kiva.org 

 

It is called: 'Aylwin's Memorial M.E. fund'

 

The best part about the Kiva donation would be that once the micro-loan is paid back, it can then be sent to sent someone else, so we could help lots of people in Aylwin's name over the years. There is no pressure for anyone to contribute (or to do so with more than a few dollars), but this is something some of us feel that we would very much like to do, is all, to honour Aylwin and her massive capacity for helping others.

 

The minimum donation to Kiva is $25.

 

(If you would like to donate a smaller amount, you can make a Paypal payment to Jodi Bassett (jodibassett@bigpond.com) via Paypal (or online banking if you are in Australia), which will in a few weeks or so be added to Aylwin's Kiva team total. Please indicate that your Paypal transfer of funds is for Alywin's memorial fund in the notes section on Paypal.)

 

So to make a loan at Kiva.org in Aylwin's name, you'd go to the Kiva.org website and follow these steps, says Ness:

• You go to http://www.kiva.org  along the very top of the page there is some options, in blue. Click on register. Follow the instructions to sign up to Kiva.
• Now, click on the tab which says 'community'. Here you can type in Aylwin in the search bar and it will come up with Aylwins memorial M.E. Fund. Click on 'join team'
• Next comes the good bit. Click on the tab that says Lend. This will take you to the list of people you can lend to. Choose who you want to lend to. There are several options on how to sort the list, do it however you wish.
• Once you have decided who to lend to choose the amount you want to lend from the drop down selection and click 'lend now'.
• To pay, click on 'My Basket' (up the top, in blue) and follow the instructions to pay. It is in this bit that you will be able to select for it to count towards Aylwins Memorial M.E. fund.
• That's pretty much it, it is quite user-friendly.
  

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In honour of Aylwin's dedication to M.E. advocacy, donations can also be made to 'The Nightingale Research Foundation' in her name. To make a donation, please visit the NRF website.

 

There is no minimum donation required at NRF.

Aylwin, flying free
20 x 20 cm, oil on board, August 2010, Jodi Bassett

Friends and loved ones of Aylwin's that would like to print a copy of this image to remember Aylwin by, can download a high-quality copy of the image here in TIFF format. (The 2 MB image is sized to 15 x 15 cm and is at 200 dpi.)