Why saying "CFS DOES NOT EXIST" is terribly harmful to ALL patients

[TheMoonIsBlue]

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.

 

[floydguy]

Is this not just going back to the CFS v. ME debate? Saying there is such a thing as CFS still officially defined as being very "tired" for 6 months and 4 random symptoms isn't very helpful either for those who are really suffering.

What I take from RLC's posts are that most of us have not been through very comprehensive and at times knowledgeable testing. I disagree on the percentage of "CFS" patients who have been mis-diagnosed but I do agree that "CFS" is a convenient holding bin for those in the medical establishment would rather not deal with a difficult group of patients. These patients may have ME or they may have other unpleasant and difficult to diagnose diseases or ones that haven't even been identified yet. And based on the loose "CFS" criteria there probably is a fair percentage who are suffering from burnout or whatever.

The key takeaway for me is that you must keep hammering away at the medical establishment to "prove" or keep proving that you have "CFS". Wouldn't it be awful to find out that you have something else, something treatable?

 

[xchocoholic]

Imho, in a way, using the term cfs as a diagnosis, can be seen as an insult to a doctor's intelligence.
They have to understand that "cfs" stands for a group of symptoms. That's exactly how it's defined.

And they are trained to look at
symptoms to determine the cause. These are highly intelligent people who can certainly comprehend
ALL of the info presented to them. They've proven that by getting their md's.

Sadly, this is where things went wrong. They were then taught
to run certain tests and / or prescribe drugs to cover up those symptoms. Had they been taught to
look for actual possible causes, imho, many cases of cfs would've been resolved already.

This is what functional medicine does btw.

Tc .. X

 

[TheMoonIsBlue]

My point was really just that when ordinary people read comments made by doctors online which proclaim that "me/cfs does not exist!" all it does is encourage people to beleive that anyone who has a me or cfs diagnosis is NOT PHYSICALLY ILL AT ALL.

I believe many people are not properly evaluated and CFS can be a lazy diagnosis, but that was not my point, nor was this mean to be a me vs cfs discussion AT ALL, I do not get into that. Please lets not turn this into a cfs vs me debate.

I actually posted this in response to a statment made by a doctor that was reposted online that called "ME/CFS pseudo science". I have no idea if he believes in the disease ME at all. Many still think ME does not exist, let alone "CFS"

It was really a plea for people to understand that when anyone, especially a doctor, says me or cfs or me/cfs does not exist, unless they follow up that statement with the absolute proclamation that ALL patients with CFS or me/cfs are still genuinley physically ILL, then people will think me /cfs is a nothing but a crazy person disease.

A statement such as " I do not believe in CFS but I believe all patients with a CFS diagnosis are genuinely ill with something or multiple things yet to be diagnosed" is an acceptable statement.

What is NOT acceptable to me is doctors just screaming "CFS is not real" "CFS does not exist"...... Because what impression does that give people? That anyone given a CFS diagnosis is crazy, or lazy.

Once again, this had nothing to do with the cfs vs me debate or about people being possibly misdiagnosed, it is about how people will perceive anyone given a cfs or me diagnosis if we have doctors going about saying CFS and or ME are not real.

I gues my first post was not very clear, I appologize.

 

[TheMoonIsBlue]

Maybe I should not have posted this at all....I hope this does not turn into one big misunderstanding. I respect everyones opinion and their right to their own opinion.

I just cringe whenever I hear "me/cfs does not exist" because I know the psychological and possibly physical damage that can be done to patients if people start think they are not even physically ill at all.....that all I want to prevent....not giving people ammunition to hurt a lot of ill and often desperate people.

 

[floydguy]

I think the problem is that it's difficult to bring this topic up without getting into the ME v CFS debate. I don't see how they can be de-linked.

I disagree with xchocoholic. An MD doesn't necessarily mean competence in all areas of medicine. It represents the ability to memorize large amounts of information. It doesn't necessarily translate into critical thinking which is severely lacking in this area of medicine. I think our experience demonstrates severe deficiencies in MD training and the current state of "healthcare". I strongly disagree with the notion that all doctors can "certainly comprehend the information as it's presented to them". If that was true we wouldn't have the nightmare stories that most of us have gone through.

 

[xchocoholic]

Hi floydguy,

I agree. I was just trying to be nice to doctors for a change. Lol ... tc .. X

 

[Ai-Yai]

Very good topic!

Doc is talking exactly good thing!
That is why almost noone get any signifant benefit from al those "CFS\ME" experts - bc those experts trying to treat the SYNDROM knowing almost nothing about its etiology and pathophysiology.

That is why i always insist on highly individual SYSTEMIC approach in each case for each person - i.e. some kind of med. investigation is needed for successful patient cure.

A statement such as " I do not believe in CFS but I believe all patients with a CFS diagnosis are genuinely ill with something or multiple things yet to be diagnosed" is an acceptable statement.

This is EXACTLY right statement! If we would have more such docs then probably we don't have have such a lot of med. troubles in society today.

Btw, TheMoonIsBlue, the more i read you - the more i like you. (just hope that you r without penis )

 

[TheMoonIsBlue]

Haha! I am indeed "without penis"

 

[xchocoholic]

Fwiw, I'm trying to be less critical and more supportive of doctors because I believe their
training is flawed. I'd be po'd if I'd spent that kind of money on an education and realized
I'd been trained to bandaid patient symptoms not help them heal.

I'm not sure what critical thinking is. Logical analysis of a patients symptoms as they pertain to
bodily functions is what I think they're capable of learning.

Dr terry wahls spoke about this in her ted video. If I remember correctly, don't quote me, but
She said that she learned how our mitochondria act but not where they come from or how to ensure they are
healthy.

I didn't see the dr in question here talking about diet either. It just amazes me that anyone with a knowledge of how
the body works wouldn't see how important nutrients are.

tc .. X

 

[Ai-Yai]

Haha! I am indeed "without penis"

Oh! I'm glad bc i like girls, esp. smarty ones


xchocoholic,
I don't know what she said about other things and don't know how good she is in CFS\ME management\treatment, but approach she claimed about real physical problems and that such problems should be carefully searched in each case is very right. I was nicely surprised by this speech from CFS\ME related specialist.

 

[xchocoholic]

Ai

This is dr myhill's approach too. I see a functional doctor who does this too. It's made a huge
difference in how I feel but I still have oi and pem and some medical problems that may not resolve.

Dr vikki peterson has some great info too.

Tc. X