Moderators: Loopz, usernick, legspin, jof, the PLA
May 12th is ME Awareness Day!
This week is ME Awareness Week!
Untangle the Spiral and be aware of ME!
If you don’t have ME write the symptom spiral out as a list.
Does it make you feel disorientated?
Now imagine every simple task you do each day being like that.
Imagine feeling like that for years and having many or all of the symptoms you have typed.
Imagine not knowing if you will ever recover.
"It's Just Fatigue: Myths About CFS."
1. Feeling Tired? You must have CFS. One of the worst myths about CFS seems to be rooted in something I call "illness amnesia," the inability of healthy people to remember what it is like to be sick. People . . blot out [the memory] of the sensation of illness... that lets you know you're coming down with something. [They think that] CFS is a sense of fatigue rather than a real feeling of having a real illness. "I'm getting what you have. I'm tired."
2. Chronic Illness Teaches You a Lot. While some people may use illness well, the illness itself doesn't necessarily teach you something important.
3. The Worst Times are the Only Times. People say "Oh, so you work in the morning when you don't feel sick." Actually, I did feel sick in the morning. And at night. Healthy people forget that having an illness often, although not always, means feeling rotten morning, noon, and night, all day and every day.
4. CFS Should Stay on Schedule. People expect us to know how sick we will be at specific times in the future.
5. You Should be Able to Control CFS. People think that taking care of yourself should certainly allow you some control over how sick you feel. The truth is, no matter how hard you try, you can't totally control the symptoms of CFS.
6. If You're Here in Public, You Must Be Okay. You're here, you're talking to people, so you must be okay, so healthy people assume. Actually, chronic illness can be almost indescribably boring. Sick people's presence at parties often means that overcoming lonesomeness has taken priority over illness. It does not mean they are well.
7. Chronic Ilness Makes You Rich. People must assume this because they say "Why don't you take some time off?" "Why not go on a long vacation?" "Why don't you hire someone to come in and help you with that?"
8. You Now Have Plenty of Free Time. People think you really aren't doing anything, so they ask you to do things like pick them up at the airport.
9. Everyone Gets Better. This one breaks my heart. Healthy people's...concept of illness seems to include only two outcomes: you either die or you recover. The myth is that you will recover or that you must now be in the process of recovering. "It may make you wonder whether you have done something so horrible that a brave front of cheery denial is all that's expected of you."
10. Everything is the Same. According to this myth, everything about the sick person and her life is exactly the same as before except, of course, for the minor matter of illness. "Your garden must be looking great after the rain." "So when are you going to get on with you life?"
11. Sick People Do Not Want Sympathy.
12. All CFS Patients Want Any Suggestions They Can Get. Some people are energetic clippers and senders of articles. I wish I had kept count of the number of articles I received on Epstein-Barr. People even urge you to try cures that did wonders for people who had problems totally unlike your own.
Dr. William Reeves - Chronic Viral Disease Branch, Centers for Disease Control and Prevention wrote:"We've documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions."
Dr. Anthony Komaroff, Havard Medical School wrote:"The bad news is we still don't know what causes it or how to treat it successfully.
But the good news is that there are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. It's not an illness that people can simply imagine that they have and it's not a psychological illness."
Leonard Jason - DePaul University in Chicago, director of the university’s Center for Community Research wrote:(link)
"With heart disease or cancer or AIDS, you have an immediate feeling from your family, your work associates, your friends, that this is something we need to be sympathetic to, we need to make accommodations for. What’s strikingly different about this illness is that the majority of people not only have to deal with a particularly debilitating health problem, they also have to deal with the stigma and societal reaction and disbelief and illegitimacy, and that is crushing, Your work colleagues say you’re malingering, medical personnel say there’s nothing they can find so they’ll refer you to a psychiatrist, and your friends begin to complain that you’re never calling them, you’ve rejected them. So this person is in the whirlwind of a terrain of disbelief that is probably in some ways unique."
Dr. Byron Hyde, Nigthingale Research Foundation, Canada wrote:http://www.nightingale.ca/documents/Nig ... ion_en.pdf
* * *
M.E. is not depression; M.E. is not hysteria; M.E. is not a conversion disorder nor is it a somatization disorder; M.E. is an acute onset diffuse injury of the brain. Psychiatrists should not ever be placed in charge of diagnosis and treatment of M.E. patients. It is simply not their area of expertise and their meddling has at times caused great harm to M.E patients. Also, during the 20 years that I have investigated M.E. patients I have yet to see a single case of real M.E. that has responded to psychiatric pharmacological treatment such that the patient has recovered and been able to return to work or school.
* * *
Graduated Exercise and the Myalgic Encephalomyelitis Patient:
Possibly due to the fact that some Fibromyalgia patients can be improved by a gradual increase in exercise, or possibly due to the so called protestant ethic that all you have to do to get better is to take up your bed and walk, some physicians have extended the concept of passive or forceful increased exercise to Myalgic Encephalomyelitis patients. This is a common and potentially dangerous, even disastrous misconception.
Doctors Jay Goldstein and Ismael Mena, using Zenon SPECT brain scans, demonstrated that the physiological brain function of an M.E. patient rapidly deteriorates after exercise. They also demonstrated that this physiological dysfunction could persist for several days following any of several stressors. The physiological dysfunction occurs whether the activity (or stressor) is physical, intellectual, sensory or emotional.
* * *
Multiple Disabling Pathologies:
Most M.E. patients have multiple disabling pathologies and it is insufficient for any physician who finds one pathology to assume he has found the one and only cause of this complex illness. Too often I have seen physicians who have found one major cause of M.E. or CFS dysfunction and illness, treat it, and then criticize the patient for not getting back to work when in reality, what the physician uncovered was only the tip of the iceberg.