Basic Stuff
- Name: Remembrance
- Country: England, United Kingdom
- County: Greater Manchester
- City: Manchester
- Gender: Female
- Age: 66
- Education: Ph.D Degree
- Primary Illness: ME/CFS
- Diagnosis:
- Chronic Fatigue Syndrome (ME/CFS)
- Postural Orthostatic Tachcycardia Syndrome (POTS)
- Irritable bowel syndrome
- Ehlers Danlos Syndrome (EDS)
- Mast Cell Activation Syndrome (MCAS)
- Year Illness Began: 1990
Functioning Interrupted
Former Level of Functionality: 100
(No symptoms at rest; no symptoms with exercise; normal overall activity level; able to work full-time without difficulty.)
Current Level of Functionality: 20
(Moderate to severe symptoms at rest. Unable to perform strenuous activity; overall activity 30%-50% of expected. Unable to leave house except rarely; confined to bed most of day; unable to concentrate for more than 1 hour a day.)
Work Interrupted
- Former Occupation: Research Scientist
- Job Responsibilities at Former Occupation:
Biological research. Report writing. Publishing. Teaching. Consultancy.
- Current Work Status: Retired
Other Interruptions
Certified Disabled: Yes
Finances:
- My parents or other family members have provided financial support
- This illness has severely impacted my ability to financially prepare for retirement
Work:
- I reduced my work hours
- I left my job or retired early
- I took on jobs with less responsibilities than I otherwise would have
Relationships:
- I decided not to have children (or have more children)
- I have been unable to or found it very difficult to date
- I believe this illness contributed significantly to a divorce or loss of an important relationship
Most Impactful Loss
The stigma around this poorly researched illness has left me humiliated, isolated and without support as well as fighting poverty for decades. I lost all that I worked for in my family life, my personal life, my career and the joy to be free to experience life beyond my solitary bedroom.
Dear Remembrance, I’ve just found you here as you’re near me geographically. I’m near the north border of Peak District. Yorkshire end. I’m saying hello because I’m a person who also has ME CFS. I also have overlapping severe Fibromyalgia, IBS ,Restless Legs Syndrome and other issues. So, may I say “Hello” and wish you well? I was born in the 1960s. Art graduate. Too tired to paint or draw now 😞 But hello.
Our patient map is opening soon. I hope you guys can get in touch.
Hi. When will the patient map open please? Yes, we will be in touch to confirm our location on the map. Please send us a brief message to stay in touch so that we don’t forget this website!
It will be opening hopefully within the week! We’ll have a blog on it. :)O
Dear Mr Cort Johnson, I remember you being interviewed by Caroline Leary of SMEFG Sheffield ME and Fibromyalgia Group in approx 2024. You came across really well. You are a super-brain. I hope your work is well funded But I had no idea that you are a fellow sufferer! Now I know. Yes, energy is probably the most important thing we have. Energy for our body is the most important thing we all have. Once the energy is depleted significantly, we lose ability in all functions. Your project to get the facts right is brilliant. I’ll donate regularly. A small amount but regularly no less.
Thanks so much Elizabeth, yes, just about everything changed for me when I came down with ME/CFS in my early 20’s over 40 years ago! Thanks so much for your support 🙂
Dear CJ, You are about the same age as me. When you were first affected by ME in your early 20s, did you know what you had wrong with you?
I remember being 18 and at college and buying iron tablets due to constant fatigue. I was always tested for aneamea but I was never diagnosed with aneamea.
Hello Bess, it’s nice to hear from you. I am sorry to hear that you are no longer able to draw and paint. Hello to you! I grew up, and spent most of my life, in the Northwest, visiting family in South Yorkshire and walking in the Peak District on high days and holidays. You live in a lovely area, and now that I live in Cornwall (also a lovely area, but I can’t get out much to experience it), I miss the Derbyshire countryside and being amongst my people in The North. I hope you are finding a way through, as you deal with those painful disorders. I find Cort’s journalism here is essential reading, to keep in touch with the science and the regular contributors. Thanks for sending me your hello, it was nice to hear from you 😊 x