Patient Stories

LisaSuffering with ME/CFS since 2003.

I'm a daughter, wife, mother and friend who has a passion to help others. I volunteer my time in the hope for treatments, cures and prevention of this disease to future generations!

Lisa

 

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KarenBMy name is Karen and I have had ME/CFS for 17 years. I was a personal trainer before the illness took my health. Now my son also has this illness. I try to keep some normalcy in my life but it's not easy. Cooking was something creative I always enjoyed in the past. Acceptance of limitations is necessary but not immediate nor easy.

In those infrequent periods of time when I can cook, I try to give the best end result for the least amount of time standing in the kitchen. I have taken cooking classes but seldom have the energy now to use that knowledge. I am always looking for things that are convienient with gourmet type results. Nutrition is also a prerequisite as protein seems to be an issue when you can't cook much! I found this recipe on Food Network and find it fits those criteria. I also have developed gluten intolerance so a great tasting protein filled dessert with no gluten is a bonus! It can be adapted for vegan diets as well.

I need to be able to give my family a good meal. I don't have much that lets me feel productive and this does accomplish some of that. I hope it does the same for you.

Be healthy as possible and live as consciously each day as you can.

Karen B.

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KarenCI was an athletic paralegal and community volunteer when I got "stomach flu"/delirium/105 fever for several days; it wasn't till much later that someone told me flu never gets above 101, that high meant something worse.  I never felt the same again.  I was lucky: I was diagnosed by a virologist one year after I got sick, and he was able to get me back to work full-time for 12 years.  Sometimes all I did was go to work and collapse into bed, but I managed.

Then I had a sinus infection, followed the next week by flu symptoms, and over the next 2 months my health spiraled downward, until I lost my job almost exactly on the 13th anniversary of getting sick.  I went from walking 5 miles a day to barely managing 2 blocks at a time in 2 weeks  – too fast to blame deconditioning.

Unfortunately, doctors blamed divorce, not disease, for my symptoms, and because they refused to look for a physical cause, I didn't get appropriate treatment.

I've been told I'll never work full-time again, a far cry from when I used to work 18 hours a day and think nothing of it.  This is NOT the way I planned to "retire" at 41!

Fortunately, I have transferable skills and could start a legal editing business working from bed, I write and do activism, so I still feel productive.  But better-informed doctors could have gotten me back to my well-paid career instead of scraping by on 6 hours a week.

Karen C.

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HollyI am 36 and have had CFS since age 18. It was triggered by an MMR vaccine required for college and within 24 hours I was very ill, which turned out to be Acute Mononucleosis. I ended up developing FM symptoms in my mid-20s. I always pushed myself hard at work and life in general to "keep up", but things got too bad and I had to stop working 2 years ago. I chose this picture that was taken of me last summer, when I had a few months that I was feeling a little better. This picture shows how I want to feel, my true spirit, not the person that CFS has left, which is a shell of my former self.

I want to add that what hurts the most is that most people don't seem to believe me, or care. I think they think I'm just depressed, when I know I have an actual physical illness. There are so many things I want to do but can't, and it's not mental...nobody would choose this kind of life.

Holly F.

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I contracted ME/CFS at the age of 41 after numerous inner ear infections and various bouts of sinusitis, I got yet another infection and collapsed with an acute vertigo attack, then all the symptoms came in, the strange tingling feelings, sweating, aching in every single joint and in every muscle, twitching, the low grade flu. My temperature control was wildly out, night sweats, the tinnitus...and so much more. I couldn't do anything without being wiped out, strangely the next day or the day after. Being wiped out has nothing to do with 'tiredness' or 'fatigue', I lose all power, all energy, it is like a car parked in the garage 2 days ago with an inside light left on, when you go to it and turn the ignition key there is a red flashing light, but no power. I found it difficult to walk, to string a sentence together, I shook and was very weak.  I just couldn't understand why I couldn't get well, everytime I pushed I was knocked back down.

Now I am doing a little better and can at least function and cook a meal for my family, but it is only by resting, without putting in rests I crash, my crashes last a couple of months and at those times I cannot function.  Post Exertional Malaise needs to be included in any diagnostic criteria for ME, I cannot understand why this wasn't nailed years ago, it is like leaving the heart out of a heart attack diagnosis.

Thank you to my family and close friends who have been there for me and never once questioned my illness.

Julie S.

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BenMy name is Benjamin. This past April (2011) marked my fourth year with this devastating illness that we often call Chronic Fatigue Syndrome, Myalgic Encephalomyelitis or sometimes CFIDS, et cetera. I am 22 years old. Though I came down with this illness at the age of 18 after a bout with mono, I have experienced extremely mild symptoms for as long as I can remember.

I saw many doctor's before eventually seeing and being subsequently diagnosed with "CFS" by Dr. David S. Bell in 2008. In late 2009 I found myself in the emergency room after experiencing a great worsening of my condition over the holidays This put me in the completely bedridden state that I am in now.

I am nearly 6'2" tall, and weigh a disturbingly paltry 118lbs. I've lost a lot weight and muscle mass. I still find it incredibly hard to get sleep. I am constantly wired and frazzled, my cognitive abilities severely diminished and my muscles ache and burn constantly. My life is spent in a bed, where I watch my friends and peers move on with their lives, doing and experiencing the things I can't fathom being able to do a fraction of anymore.

I have tested positive for XMRV. I pray for effective treatments for this illness if not a cure, and hope to see a day where doctors and clinicians, let alone the general public, understand our illness and treat it like the serious, utterly debilitating, life-snatching illness that it is.

Ben D.

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patientBefore November of 1995, I was a strong woman who felt independent and capable of doing anything she set her mind to. I had moved into my first apartment, redecorated, painted, wallpapered and sewed curtains. I worked in sales with my father and would come home after a long business trip to work in my garden. I moved furniture up and down stairs by myself and I loved to cook, dance and travel. After a second case of mono, I never fully recovered and experienced a rapid decline with increasing widespread pain, muscle weakness, exhaustion, rapid weight gain, and frequent migraines. At first I would describe it as a cross between a chronic flu like state and mono. After 16 years, it is more like a combination of flu/mono/Lupus/MS. Each year seems to bring with it new symptoms. During brief remissions, I pushed to complete a graduate degree in English education, got married and had children. I had no clue that my remissions would become shorter and fewer over the years. My advocacy work is a frequent reminder that I am fortunate to have these parts of normalcy in my life. I try my best to speak for those who are bedridden for decades with severe neurological issues and a devastated immune system. The WPI is my hope. I no longer despair that no one will step up to the plate with innovative, cutting edge research. They did this before even opening their doors. I can never thank them enough.

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EdMy name is Edward and I'm 36 years old from Eccleston, St Helens.

Every day is a struggle for me. I started with ME after having severe bronchitis in 2010 which took three months to get over. This may sound ridiculous but I am simply too tired to think and to talk every day and it has changed my life completely. I was a real chatterbox before and was very active socially and now ME has had a massive effect on me and my life.

Kind regards,
Ed M.

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KaliDiagnosed since late 1980's with CFIDS, FM, EBV, CMV, HHV6, Chronic C. Pneumonia, MS, Encephalopathy, Migraines, Hypothyroidism, positive IgG for Lyme, and Babesia. I'm 57 and have taken a turn for the worse over the last 2 years.

I love life so much that there simply were not enough hours in the day even with the initial diagnosis' for me to have my career in Business Development, my hobbies of belly dance and teaching it, sewing, costuming, renaissance fairs, entertaining, traveling, hiking, kayaking and swimming, herbology, aromatherapy, and decorating and maintaining my home  I have lost the ability to do ANYTHING that once brought me joy and a sense of accomplishment.

My Husband remains the one person in my life that offers consistent empathy and understanding. I've had people tell me if I was as sick as I claim to be I wouldn't look so good...it INFURIATES me. I've been sick since I was in my late 20's I'm now in my late 50's.. He offers consistent support and encouragement and acceptance for what is NOW.

I think the project you're doing and "I Hope You Dance" Hits me in the heart. My dancing was THE most natural and personal way I expressed my love for life, my femininity, and my connection and gratitude with my higher power. To have that taken away was a tough pill to swallow. There would come a day someday where I could dance again and I may even be able to teach again and share my joy with others!!  Thank you for the reminder!!

Kali

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MaxineMy name is Maxine, I have suffered with M.E for 17 years. I was a fit and active person, in my last working post I was a Registered Nurse.

Due to the brilliant research of WPI, I and many others "have hope", hope that one day we may have our lives back. Back in December an idea was born to raise funds for WPI & Count ME In was started. 

 

Kind Regards
Maxine M.

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JillI am a 40 year old mother of three and am diagnosed with ME/CFS, lyme disease and several co-infections. I have been ill for 10 years and also have a twin sister diagnosed with lyme disease as well as a child on the autism spectrum.

Before my illness became chronic, I was actively involved in my children's schools and activities and spent most of my free time at the gym, cycling and having coffee with friends. Now, I spend most of my day in my chair  gathering information on these related neuro-immune diseases and sharing what I learn.  My hope is that one day more researchers, physicians and organizations will begin to see this connection, pursue  future research based on this knowledge, and find the underlying cause of these debilitating illnesses.

I feel like I have lost my 30's and do not want to lose my 40's as well. I want my children and their children to receive appropriate medical care. I want this care to come without a fight and without humiliation.

Jill J.

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MaschelleHi!  I'm a 49 year old single mother with three grown children, and one ten-year old child.  I have ME/CFS, FMS, and have been sick for 5 years.  Catlyn and I were living in Nome, Alaska when I was diagnosed with FMS, and had to return to the lower 48 for better medical care.  Two years later, and much, much sicker, I was diagnosed with CFS.

Maschelle M.

 

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butterflyI have been sick with ME/CFS and Neurally Mediated Hypotension, with other diagnoses in the onset stage, for over a decade. Before getting sick, I was a vibrantly alive professional with a great social life, and an extremely healthy lifestyle. I've climbed many mountains around the world.

I now cannot work; am close to housebound; have to manage energy-use very carefully to manage to take care of myself eg if I take a shower, it will be about 2 days of recuperating before I can go get groceries and for a few years brushing my teeth was too tiring to do; have an extremely limited social life as talking and listening are complex tasks and are very tiring; and my exercise is when I can move around the house or do my out of the house survival tasks like getting groceries. From always having an extremely clean house, my house is only clean now when someone hires me a cleaner as a present. My mountains now are trying to get something from upstairs. I've had to have my bed moved to the main floor.

I have about 10 - 15% of my pre-disease energy, the energy to think, move and feel. From being a speed-reader, reading is now very difficult - I can look at a page, see that there are words on it, but there is no energy left to process the meaning of them. I have to take time to plan most things as it is often difficult to think on the spot. My sense of humour disappears when I am tired.

We need research, clinical trials, and doctor education now. There are a million things I want to do again.

Thanks,
Leela

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KristiI am a mom of two fabulous kids and a wife to an amazing husband.  In 2007 at the age of 38,  I became really sick, and I was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia. I was so relieved that I did not have a life threatening disease! Little did I know the journey that I was in for. Turns out - I probably have a newly discovered retrovirus, which is a little scary since the only other two retroviruses are HIV(AIDS) and HTLV(Leukemia).  In June 2010 - I went to Stanford to participate in the most extensive study on CFS/ME to date.   

It has been a challenging 4 years. I have lost a part of my life, my health, friends, family, financial security, and my finance career of 15 years. But I have also gained so much; new friends who support me, a stronger faith, and a greater enjoyment and appreciation for life. I am so blessed to be married to a husband that continues to amaze me with his support and love. I am blessed with two beautiful children and I cherish our time together.

I pray a lot, and I know that God is using this illness to transform me into the woman he designed me to be.

Best Regards!
Kristi M.

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