TheMoonIsBlue
Senior Member
- Messages
- 442
This is a response I posted in the ME/CFS Doctors section, the post title "Looking for a good CFS doc in New Jersey/New York City".....in response to some comments made by a Dr. Mirza which member rlc posted starting at post #22
(This is an OPEN FRIENDLY HONEST DISCUSSION. I am not fighting with anyone and certainly not rlc....like I said before, I agree to disagree, but I felt so strongly about some of the comments made and reposted by this Doctor and some of the additional comments in response I had to repost this)
I posted this in Symptoms as it gets a lot of views. If there are a ton of spelling errors, forgive me. If some of it is run on sentences that dont make much sense...please forgive me again. Brain fog!
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I have a major problem with random Doctors saying that CFS does not exist on the Internet where millions of people can see......and the reasons for this are: (and I think most poeople will agree with this).....
#1. There are thousands of people bedridden with M.E. who are given a diagnosis of CFS.
So anytime anyone says CFS is not real, they think that Myalgic Encephaolomyelitis is not real.
This leads to people possibly being "sectioned" and put in a hospital. And get sicker. MUCH sicker. Or their doctors tag them with a mental illness. And friends and family think they are making it all up. CFS is not real. Thus ME is not real. So what if you cant move from your bed? Get up....it is all in your head.
And.... since people have died from M.E., I strongly encourage people to never to say CFS is not real, because it is the lay person who clings to that statement, and damages and could kill people with M.E. AND people with unexplained severe illness who have been given a diagnosis of CFS.
AND...... #2..Even people who you think are "mis-diagnosed with CFS", since some people think a CFS is totally bogus, but have no other diagnosis to tell friends, family and doctors other than CFS, people will think they are CRAZY or FAKING because they heard some doctor say "CFS does not exist".
They won't understand that what the doctor is actually trying to say when they say that "CFS is not real or does not exist" is many people with CFS are simply misdiagnosed but genuinely VERY ill, physically very ill, ......they will just think their friend/family member with CFS is a crazy person because they are tagged with this "fake illness" and that there is NOTHING wrong with them physically.
This can lead to ..........
Death possibly due to genuine real illness
Suicide
Complete despondancy and Depression due to being tagged with a "fake" illness
People got getting financial support- coud lead to homelessness
People not getting physical support- coud lead to severe worsening of their illness or death
So you see what saying "CFS DOES NOT EXIST" does to real people in the real world? Doctors just say it and think it has no impact on patients with a current CFS diagnosis. WRONG.
So I do have major issues with any doctor saying CFS does not exist because #1. It still does not move science foward and #2 IT HARMS ALL PATIENTS who already have disbelieving families and could stop people from receiving disability and all sorts of awful things!!!
Words are powerful and people cling to them when they can use them as weapons to hurt people.
"I heard a doctor say that CFS does not exist. Have you seen a psychiatrist? "
You cant have CFS, it is a fake illness!"
"Oh yeah...I HAVE CFS TOO.....but I still get up and go to work!!!
..........these are examples of what the ordinary lay person think andp possibly will say when they hear a doctor proclaim that CFS does not exist.
REGARDLESS of whether or not you think CFS exists, or you think that all CFS patients are simply misdiagnosed, I for these reasons am TOTALLY against Doctors ONLINE stating that "CFS IS NOT REAL" because it harms all patients who have been given an ME or CFS diagnosis, because they are all GENUINELY ill.....people will not understand that they are genuinely physically ill with something, they will just think they have a bogus fake illness.
(This is an OPEN FRIENDLY HONEST DISCUSSION. I am not fighting with anyone and certainly not rlc....like I said before, I agree to disagree, but I felt so strongly about some of the comments made and reposted by this Doctor and some of the additional comments in response I had to repost this)
I posted this in Symptoms as it gets a lot of views. If there are a ton of spelling errors, forgive me. If some of it is run on sentences that dont make much sense...please forgive me again. Brain fog!
---------------------------------------------------------------------------------------------------------------
I have a major problem with random Doctors saying that CFS does not exist on the Internet where millions of people can see......and the reasons for this are: (and I think most poeople will agree with this).....
#1. There are thousands of people bedridden with M.E. who are given a diagnosis of CFS.
So anytime anyone says CFS is not real, they think that Myalgic Encephaolomyelitis is not real.
This leads to people possibly being "sectioned" and put in a hospital. And get sicker. MUCH sicker. Or their doctors tag them with a mental illness. And friends and family think they are making it all up. CFS is not real. Thus ME is not real. So what if you cant move from your bed? Get up....it is all in your head.
And.... since people have died from M.E., I strongly encourage people to never to say CFS is not real, because it is the lay person who clings to that statement, and damages and could kill people with M.E. AND people with unexplained severe illness who have been given a diagnosis of CFS.
AND...... #2..Even people who you think are "mis-diagnosed with CFS", since some people think a CFS is totally bogus, but have no other diagnosis to tell friends, family and doctors other than CFS, people will think they are CRAZY or FAKING because they heard some doctor say "CFS does not exist".
They won't understand that what the doctor is actually trying to say when they say that "CFS is not real or does not exist" is many people with CFS are simply misdiagnosed but genuinely VERY ill, physically very ill, ......they will just think their friend/family member with CFS is a crazy person because they are tagged with this "fake illness" and that there is NOTHING wrong with them physically.
This can lead to ..........
Death possibly due to genuine real illness
Suicide
Complete despondancy and Depression due to being tagged with a "fake" illness
People got getting financial support- coud lead to homelessness
People not getting physical support- coud lead to severe worsening of their illness or death
So you see what saying "CFS DOES NOT EXIST" does to real people in the real world? Doctors just say it and think it has no impact on patients with a current CFS diagnosis. WRONG.
So I do have major issues with any doctor saying CFS does not exist because #1. It still does not move science foward and #2 IT HARMS ALL PATIENTS who already have disbelieving families and could stop people from receiving disability and all sorts of awful things!!!
Words are powerful and people cling to them when they can use them as weapons to hurt people.
"I heard a doctor say that CFS does not exist. Have you seen a psychiatrist? "
You cant have CFS, it is a fake illness!"
"Oh yeah...I HAVE CFS TOO.....but I still get up and go to work!!!
..........these are examples of what the ordinary lay person think andp possibly will say when they hear a doctor proclaim that CFS does not exist.
REGARDLESS of whether or not you think CFS exists, or you think that all CFS patients are simply misdiagnosed, I for these reasons am TOTALLY against Doctors ONLINE stating that "CFS IS NOT REAL" because it harms all patients who have been given an ME or CFS diagnosis, because they are all GENUINELY ill.....people will not understand that they are genuinely physically ill with something, they will just think they have a bogus fake illness.