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Who: Doctors from Columbia Medical center are interested in creating a mobile app called “my ME/CFS” for those with Myalgic Encephalomyelitis (ME).
What: A survey that would provide information to doctors that are aiming to create this application; the app would provide a place for individuals with ME to report on their symptoms.
Where: At your convenience from home!
How: Please follow the link below to the survey.
#MEAction knows COMMUNITY IS KEY! It is through community that we find strength and feel fully seen and heard by others who know our struggles. When challenges come our way, this community has shown us over and over again that we are stronger together. “#MEAction’s community has made sense of this nonsense world of chronic
Given the rapidly changing landscape at the federal level, we recognize that the road ahead may bring some changes for patient advocacy. Even in this evolving environment, we’re excited to share some positive news: #MEAction and the Mayo Clinic have been awarded the Sigma 2024 American Nurses Credentialing Center Evidence-Based Practice Implementation Grant awarded by
You are cordially invited to The Beth Mazur Innovation Prize Fundraiser on Wednesday, November 13th at 2pm PST/5pm EST. Beth Mazur, who co-founded #MEAction was a kind and compassionate human being. She cared deeply about the ME and the Long COVID communities. She also cared deeply about innovation, new creative ways to solve problems that
9 thoughts on “Enrolling: Take an online survey to give feedback on a new app for ME”
I have had severe ME 23 years. I have found daily close diary keeping of my activity levels and symptoms to magnify the whole situation. This makes me feel 10 times worse. So what I do is set my boundaries (do’s and don’ts), then living within these boundaries, try to forget about my illness as much as possible. I think medical proffesionals should know how we live, how awful this prison is, but as a database of “a week in the life ” of many different people.
Its important to consider in your survey that people with ME can sometimes come across as hypochondriac and that the questions and answers dont make us look like this. Being immensely restricted on all fronts with no prospect of improvement can lead to despair and hysterical franticness. Add to that being disbelieved this all can lead to obsessing over the illness and constantly talking about illness to prove its real.
Please take the survey so that they can see your answer, Michelle!
did that but they didnt see this info
ME/CFS is undiagnosed Ehlers Danlos Syndrome some can have multiple copies & the likelihood they also have (HATS) Hereditary Alpha Tryptasemia Syndrome or some have (AG) Alpha Gal Meat Allergy all along
I think the survey and regular feedback is a good idea. I think the questions would be better if they also included how you were feeling emotionally. So it would include, physical, mental and emotional activity. High levels of emotion like feeling all charged up looking forward to something leave me as drained as a funeral.
The option of which food groups we have eaten that day way help as sugar makes me worse the following day.
The survey asked how often we would use it but with a fluctuating illness it would be when I feel well enough or did not need the energy for a higher priority task like a bath. So an option to just check good day, bad day or more detail would help.
Lastly if it asked me everyday did I go out yesterday/ see friends/ have a life and every day I answer no then I would find it depressing and not use it.
Thank you and best wishes.
If someone has the (AG) Alpha Gal Meat Allergy they can be Allergic to Sugar Processed type the reaction can come on even 24 hours later same with Meat, Dairy Products…Sugar is processed in factories using Bone Char from animals containing Alpha Gal so it is something that must be ruled in/out. Not saying
you have this but I have seen it in this patient population also one can have undiagnosed Hereditary Fructose Intolerance (HFI) Fruits Fructose even Sugar reactions a Genetic test is available. I cannot tolerate Sugar at all & countless fruits also Fake Fructose is in countless foods now…
Elley, please take the survey so that the researchers can see the answers to your questions!
Would this app be available to people outside the USA as I am from the UK. I think the app is a good thing up to a point. It may help people to manage their symptoms better. As it is a hard disease to manage because it’s so unpredictable and fluctuates from day to day.
Who will really benefit from this intense data harvesting? Possibly Columbia doctors who might be tied into some well-paying corporate data group not interested in providing individual protocols for all our highly individualized cases?
Maybe I have not read the background of this survey material closely enough; we know what has happened with Google, Fakebook, 23andme, etc.; too often unknown others profit through promises of confidentiality that are not kept. “They” are almost always hidden and have billions in corporate profit to provide sleek answers to mollify the vulnerable disabled ones, although ME Action has some bold and courageous people participating. The healing and cure horizon keep receding, it seems sometimes, with more distracting data collected. We have been fed insane amounts of data and been denied much truth by those who do know what has been happening to our collective immune systems, and that of other species and the planet’s too.
I have good reason to be skeptical about more surveys and detailed record keeping. Last week at my environmental immunolgist appointment, I asked pointed questions about M.E. and toxic mold exposure. I was informed by the clinic that some kind of tabulation process of their huge patient data base has been conducted. Of patients who had taken a clinical mold exposure urine test, something around 80% of patients tested as being mycotoxin poisoned. Mycotoxin poisoning parallels all the symptoms of M.E. This is explosive information with huge financial implications for the medical-industrial complex, biomedical corporations, researchers, universities, the insurance and building industries re: M.E./ CFIDS/Lyme, etc. Always follow the money trail, and always ask hard questions of the “authorities.” Some very brave doctors and health advocates are telling the truth about environmental factors in M.E. against all odds.
For me, any data gathering that omits close questioning about CFS/M.E. experiencers living in possibly water damaged buildings/dwellings (80% is the latest figure I have heard from a researcher; that is most of us) and mycotoxin test results and protocols is a step away from real healing, a distraction.
Regrets for any offtopic info in this post; this is the first opportunity I have had to get this info out into the activist community. I hope the community is outraged enough to demand personal and collective publicity re: mycotoxin poisoning as a primary or sole causal agent in this intentionally neglected immune disease that, depending on individual genetics, leads to dozens of other conditions, including various cancers.
Thanks to all activists who keep asking all the hard questions of those who in some way might want to keep people not thriving and recovering, but just marginally hanging on. Those who refuse the old conventional answers and outdated systems theory thinking may find themselves on a much faster track to recovery. Full wellness, courage and recovered lives for all!
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