ME/CFS: Recognition, medical care & protection for affected persons and research funding

My wife suffers with ME

I have suffered from this illness for 5 years. There is a disgraceful dearth of knowledge, understanding and effective treatments of and for the condition. In spite of this, the mainstream profession acts to suppress promising approaches to the illness adopted by alternative practitioners. The fact the mainstream profession has failed to develop effective treatments is negligence; that they pursue others who seek to do this is sadism.

It's important because it signifies that not only myself someone that has been affected with this condition but many others get recognized and get validated for all of the pain and suffering that we still have to enter each and every single day.

ME/CFS affects people around the world, and research is proving that it has complex biological causes. Patients need the supports and treatments to live better and more fulfilling lives until there are adequate treatments found that restore health.

ME patients deserve research funding and recognition commensurate with illness severity and prevalence.

ME/CFS is a condition that destroys both sufferers' and their families' lives. It is exarcebated by health care professionals not knowing what it is, what it entails, and how to deal with it. More research and education is needed.

The European Commission can make a positive difference in potentially 10s or 100s of millions of lives for persons, families, communities and societies across the world. For decades upon decades, persons with rare diseases (many with undiagnosed rare diseases) are simply sidelined by each tier of the "health-care system" and left to fend for themselves, essentially, in many cases paying for healthcare while being denied healthcare.

For 12+ years I still have no clear diagnosis and I have been worsening each year since. I have been to dozens and dozens of GPs, Specialists and even medical "Professors" over those years. I have been told it's probably a rare/”not yet diagnosed disease”, but because it isn't contagious "just learn to live with it" and “be happy with the life you have”. With such a condition, in many cases you also don't get any useful diagnosis, and no subsequent medical practitioner takes it seriously while your quality of life gradually goes from perfect and healthy to being unable to eat for yourself, care for yourself, be upright, walk, think clearly, concentrate properly, sleep effectively, nor do anything that a living being should be able to do… right before your eyes and the eyes of your loved ones.

Much of the failure to diagnose, acknowledge and treat symptoms related to rare diseases is due to many medical practitioners viewing "rare" as meaning "you don't get rare disease". It is not viewed as a priority at any level and not worthy of medical care, nor are you, the patient.

Failure to acknowledge, diagnosis and treat rare diseases results in: medical gaslighting, humiliation and ridicule of patients, clinical decline, loss of earnings, significant, yet preventable loss of quality of life, major financial burdens, major health system burdens, inability to contribute meaningfully to society, inability to develop one’s self, and in many cases a slow, painful life and death. This is preventable, and the European Commission has the power to make a difference in this “non-communicable pandemic” affecting 10s to 100s of millions of lives.

I am close to someone who suffers from these conditions. It is clear that it is frustrating and has a significant impact on quality of life; employers are not understanding.

ME needs to be recognized in all countries around the world. ME is a real health issue and the people who suffer from it deserve to be recognized and to have treatment.

My close relative and friends are impacted by some un explainable illness and this research funding will significantly assist

I have ME/CFS

The corruption & millions made around bogus research needs to be stopped. This is 2021 not the dark ages where peddling ‘snake oil’ treatments including, clapping your hands on a piece of paper is the excepted norm. This is a nonsense, & needs to be stopped with legislation & forwarded with biomedical research & education of medics.

I’m an ME patient who wants to see equitable health for the global community

Because I believe firmly that everyone is entitled to a good life in freedom and safety to develop themselves and the state should guarantee this right to everyone.

I have ME and want to support others in the same situation.

I suffer from ME/CFS and want to see more research into it and compassionate medical treatment of patients.

When looking at the disease burden, ME/CFS is the most underfunded disease in the World. No effective treatments exist at present and there are millions of people suffering from it worldwide. The number of people affected with this disease is expected to increase substantially as a result of Covid-19. ME/CFS is triggered by a viral infection in 80% of cases.

I have ME.

I have ME and worked in Austria for years, I love Austria and Austrian people.

I’ve suffered ME/CFS for 32 years, 5 of those years have been very severe
People are worse than me. Yet nothing has been done to elevate the endless suffering. It’s appalling the way ME/CFS has been neglected. The most neglected disease in the world! Now Long Covid has arrived we have no cure. Yet there could have been a cure or treatment ready and waiting. Now worldwide millions more unnecessary suffer. All due to funding research neglect.

ME/CFS is the most underfunded, misunderstood complex chronic illness with life-altering consequences even at the mild end of the spectrum. Patients have been mistreated, disbelieved, gaslit and abused for decades. Enough is enough.

ME CFS are diseases where the medical profession & most governments are not up on the research, thus not helping to harming an estimated 20M or so internationally. This entails a huge economic burden. There is the lowest quality of life of all diseases. Providing proper disease management & symptom treatment from the beginning increases chances of recovery from the slim 5-10% it is now, Funding biomedical research will hasten the day we see disease treatment. Austria needs to follow the US & UK in recognizing this serious complex physical disease.

I v been ill with ME for 16 years

Because my Austrian wife has CFS.

My wife has severe ME/CFS. It has upended our lives. She has been bedridden since 2015. We need a cure!

I have ME/CFS

People with MECFS have been waiting for recognition, support and effective treatments
for decades.

Wissen ist wichtig, damit man richtig helfen kann. Es gibt viel mehr Krankheiten, die ähnliche Symptomen haben.

so many are ill and there needs to be a cure

I know people who are being ignored by doctors but they are suffering