Best answer to a non-believer

Nielk

Nielk

Senior Member
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6,970
I know that this topic has been dealt with in the past - many times.

I am looking for a clear convincing way to explain ME/CFS with all it's horrible symptoms to:

1- relatives
2- friends
3- doctors

who think that this is just a made up disease that is psychosomatic.

Am I looking for the impossible?
 
C

CBS

Senior Member
Messages
1,522
Nielk said:
It's a good suggestion and someone else told me the same exact thing but, do you really think that these people would have the patience and the willingness to sit through an over an hour video?
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He answers the question - is this real? - in the first 30 seconds. There's nothing out there that is better than the first five minutes. If they won't watch beyond that then you're wasting your breath.
 
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SpecialK82

Ohio, USA
Messages
993
Location
Ohio, USA
Nielk - sometimes to explain it quickly to friends, I say that it is very much like MS. To others who won't freak out too much, I'll say it's like a cross between MS and AIDS. That seems to get some immediate understanding.

Doctors though are tricky - most are dismissive when it's mentioned, so I usually say that I'm seeing one of the world's leading CFS specialists (which is true) and this is what they recommend, etc. etc. It's very dicey, I usually take great pains to remain cool and calm during the entire conversation so that they don't think it's mental. I also bring them just one thing from the internet (so they aren't overwhelmed), like the recent protenomics research on spinal fluid.
 
drex13

drex13

Senior Member
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186
Location
Columbus, Ohio
I've don't have a good answer. I've pretty much avoided this altogether sinced I was first diagnosed 15 years ago. The only people who know are my wife and my mom. Most people wouldn't know I was sick anyway, as most of the time I look fine and fortunately I've been able to work, etc... When I go through bad stretches, I'm aware that I probably look sick, and I tend to drop alot of weight then, but I don't bother explaining anything to anyone.
 
Nielk

Nielk

Senior Member
Messages
6,970
drex13 said:
I've don't have a good answer. I've pretty much avoided this altogether sinced I was first diagnosed 15 years ago. The only people who know are my wife and my mom. Most people wouldn't know I was sick anyway, as most of the time I look fine and fortunately I've been able to work, etc... When I go through bad stretches, I'm aware that I probably look sick, and I tend to drop alot of weight then, but I don't bother explaining anything to anyone.
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I hear what you are saying and I wish I could ignore the whole topic with people but, my situation is different. I've been very limited in my activities, have had to quit work 7 years ago and am in constant pain.

Lately, I have had to endure hurtful remarks from family members and my GP.
I go to a cfs specialist but also have a GP nearby for other issues. I have just gone to him this week because I'm suffering now from an ear infection. He knows I suffer from CFS but I don't think he thinks it's a real disease. I asked him if he heard about the XMRV that they found in the majority of CFS patients and he grumbled no. When he checked my ears he suddenly perked up and said yes, they are red and inflamed." THIS IS LEGITIMATE!" he said. What? - this is legitimate because you can see the redness but CFS is not because you can't see anything? (I didn't say anything- just thought it) It's just like Montoya said in his speech - CFS is not like pneumonia where you can see a dark spot on an x-ray.
 
Wayne

Wayne

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4,480
Location
Ashland, Oregon
Hi Neil,

I made the following post regarding a recent article/video by Amy Dockser Marcus in the Wall Street Journal. A succinct six-minute video might work for some you have in mind.

Just remember, there are some who don't want to understand the truth of ME/CFS, and no amount of information, etc. will convince them otherwise. From my perspective, they simply prefer to hang onto their vanity.

Good luck!

Best, Wayne
............................................................

I thought this was another very good article by Amy Dockser Marcus. I was even more impressed by the video that accompanied this article; I can't think of another CFS video that succinctly explains as much about CFS in such a concise manner.

Wall Street Journal Report on XMRV in Lyndonville 'CFS' Cohort

This video offers both historical perspective, and recent research findings, although unfortunately, nothing about the spinal fluid proteins findings. In my mind however, a great 6-minute video with a compelling story that has the potential to stop many of our detractors in their tracks.

I think this video would also be excellent for those who would sincerely like to know more about CFS. It offers a convenient (and credible) way to find recent and easily understandable information in a short and easy to view segment. Kudos to Amy Dockser Marcus for an extraordinary article and video combo.
 
Nielk

Nielk

Senior Member
Messages
6,970
Wayne said:
Hi Neil,

I made the following post regarding a recent article/video by Amy Dockser Marcus in the Wall Street Journal. A succinct six-minute video might work for some you have in mind.

Just remember, there are some who don't want to understand the truth of ME/CFS, and no amount of information, etc. will convince them otherwise. From my perspective, they simply prefer to hang onto their vanity.

Good luck!

Best, Wayne
............................................................

I thought this was another very good article by Amy Dockser Marcus. I was even more impressed by the video that accompanied this article; I can't think of another CFS video that succinctly explains as much about CFS in such a concise manner.

Wall Street Journal Report on XMRV in Lyndonville 'CFS' Cohort

This video offers both historical perspective, and recent research findings, although unfortunately, nothing about the spinal fluid proteins findings. In my mind however, a great 6-minute video with a compelling story that has the potential to stop many of our detractors in their tracks.

I think this video would also be excellent for those who would sincerely like to know more about CFS. It offers a convenient (and credible) way to find recent and easily understandable information in a short and easy to view segment. Kudos to Amy Dockser Marcus for an extraordinary article and video combo.
Click to expand...

Thank you Wayne.
You are right. It is an excellent informative video.
 
S

Sean

Senior Member
Messages
7,378
Remind them how multiple sclerosis, Parkinson's disease, hypothyroidism, etc, etc, etc,... and most recently, stomach ulcers, were all considered to be purely psychosomatic, no doubt at all among the establishment medical scientific experts. They typically get irritable and bossy, shuffle paper, change the subject, etc.

Change GPs, if possible. Sounds like dead weight to me.
 
Nielk

Nielk

Senior Member
Messages
6,970
RestingInHim said:
check out my blog...had entry on this and got several replies. hope it helps!
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Thank you for guiding me to your blog.
Interesting comments on there.
I want to join in welcoming you back to the Forum and hope things ease up for you.
 
Enid

Enid

Senior Member
Messages
3,309
Location
UK
We probably will not persuade anyone (family/friends/docs - on the whole) until a "something" virus named disease/process can describe. But this illness is "visible" to all in the meantime and has a name already.
 
Nielk

Nielk

Senior Member
Messages
6,970
Enid said:
We probably will not persuade anyone (family/friends/docs - on the whole) until a "something" virus named disease/process for them to latch onto. Human nature (for some) it seems.
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Enid,

That's exactly the frustration that we face and it doesn't look too promising right now with the controversies over the existence of XMRV in ME/CFS patients.

One would expect though to be believed of symptoms that they are suffering from, especially by people who are close to them.
I understand Insurance companies or Government agencies trying to dismiss us because there is financial benefit for them to persuade the world that this illness doesn't exist.
I don't understand people close to us making demeaning remarks, even if deep down they are skeptical.
 
Enid

Enid

Senior Member
Messages
3,309
Location
UK
Thanks Wayne - a joy to see your postings. Much appreciate the way ME/CFS is "flooding" the US media now. Can only help us here too. Marker proteins in the spinal fluid and retrovirology/interactions looking so promising. We are on the way !. (though I must personally say lost family friends and Docs - hope everyone else doing better with much understanding now research is revealing all).
 
Nielk

Nielk

Senior Member
Messages
6,970
Yes, thank you Wayne!

Both these videos are very helpful & hopeful for us.
 
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