Chronic Fatigue Syndrome turned me into an invalid/nursing case.
Melanie Schickendanz suffers from CFS. The most common prejudice: The woman can’t cope.
In 2004 Melanie Schickendanz (36) went down with ME, also called CFS. She was bedridden in 2010, and reduced to a care case in 2011. As far as the trained office administrator is able, she commits herself to educating people about the illness. In her blog she reports on ME.
Hardly Any Doctor Took Me Seriously.
Even during an infusion to treat sudden deafness in 2004, I felt strange. I had hardly got home before I vomited and my temperature rose to nearly 40 degrees. Although I improved a little over the next few days, I became weaker and weaker.
After one year I could no longer work and was officially signed off sick. But hardly any doctor took me seriously. The health insurers put me under pressure with weekly phone calls telling me to go back to work. As soon as I could just about manage to walk a few steps, thanks to an alternative practitioner, I went back to full-time work at the office. Even though I was only commuting between work and bed, my body broke down completely after a few months. In end I was hardly able to lift a full file out of the office cupboard.
Once again I was sent from one doctor to the next. One would accuse me of being lazy, the next, that I was imagining everything. One doctor told me to find a man so that I could have a decent sex life.
It only became clear in 2008 what my problem was – thanks to the infusion, I had gone down with ME.
What is ME?
ME stands for the illness „Myalgic Encephalomyelitis“, also known by the trivializing and confusing name CFS (Chronic Fatigue Syndrome). With 300,000 affected in Germany (17 million worldwide) we have more CFS sufferers than HIV or MS patients.
Since 1969 ME has been classified as an illness of the central nervous system and is diagnosed by exclusion. Even so, I had to pay the costs of ME-relevant blood tests and dietary supplements myself. To date my expenses run into five figures.
What ME Does To You
The effects of ME are devastating. A main feature is the indescribable bodily weakness, a strong feeling of illness (malaise) and deterioration following physical or mental exertion. In addition gastrointestinal problems, swollen and painful lymph nodes, throat infections, susceptibility to infections, pains all over the body, heart problems.
The consequences of ME can be fatal.
The limitations range from difficulty managing daily living to being completely bedridden in a dark room, unable to speak and being artificially fed. Often more than one family member becomes ill. ME also affects children and young people.
A Danish study which investigated the quality of life of ill people showed that ME patients have the the lowest quality of life. In the whole of Germany, there is no clinic and no care home equipped to deal with severe ME patients. A stay at a clinic is so stressful that it worsens the condition.
Relief followed by disillusionment
After the initial relief of finally knowing what I have, and the hope that I could be helped, followed the disillusionment: ME is incurable and there is no standard treatment. There is also no basic medical care for us. Germany does not award any research funds for ME.
On top of this, sufferers fall through the social safety net. You are forced to fight to have your disability and incapacity to work recognised, often without success and with the result that your condition further worsens due to overexertion.
Myalgic Encephalomyelitis versus Chronic Fatigue Syndrome
A fatigue syndrome is an attendant symptom of many illnesses. As ME is often also called “Chronic Fatigue Syndrome”, this leads to confusion. The illness is often mentioned in the same breath as burnout, depression, overwork and anxiety disorder.
To get a diagnosis of ME, psychological illnesses have to be excluded as the cause, even though umpteen studies have clearly proved that ME has physical causes.
Three wrong statements appear again and again about ME:
1. “Those affected suffer from tiredness”
Sufferers’ bodies are no longer capable of generating energy. This has nothing to do with tiredness.
2. "Those affected should pull themselves together."
It is the body that is lacking energy, not the sufferer who is lacking willpower.
3. "Physical exercise helps."
Physical exertion makes ME worse.
When Rigged Studies Cause Harm
Again and again, CBT and GET are cited as successful treatments. Recently articles by journalist and health expert David Tuller have received a lot of attention, in which, together with other experts, he uncovered how the famous PACE study was fiddled in order to falsely claim that GET and CBT help with ME. Since then other journalists and experts have also come to the conclusion that the study contains huge errors.
Also in Germany, thanks to this study, sufferers are forced to undergo such treatments and worsen their condition, under threat of having their financial existence removed.
The Worst Thing is the Prejudice
The illness turned me into a bedridden care case. However, the worst thing about the illness is the prejudice from my fellow human beings, and that I have to continually justify my poor state of health.