Another blog with misinformation

[Boule de feu]

It really bothers me when I see this type of misinformation about ME/CFS.
This one is by a medical student who wants to become a doctor.

http://kennethkee.info/blog/family-...ly-doctors-tale-chronic-fatigue-syndrome.html

We could leave a comment to let him know that what he is describing is CF not CFS?

EDITED POST (APRIL 30, 2011) - This medical doctor was receptive to our comments and made the necessary changes. Thank you everyone for your input in this matter.

http://kennethkee.info/blog/medical-case-studies/a-family-doctors-tale-chronic-fatigue-syndrome.html

 

[Tulip]

Yes something needs to be said, I might say something.

Unfortunately I think he is speaking for 99% of family doctors out there who also think that is what it is. How embarrassing for them, especially when a simple google search will reveal the true nature of what it really is...

 

[ixchelkali]

I left him a friendly note referring him to the Canadian Consensus Guidelines and the Fukuda criteria. I thought I'd try education rather than bludgeoning, since he may well be just repeating what he was taught in med school. Maybe he'll be interested in learning something more accurate. Hope springs eternal. And if he isn't interested in learning what it really is, nothing we say is apt to change his mind.

 

[blacksnake]

It really bothers me when I see this type of misinformation about ME/CFS.
This one is by a medical student who wants to become a doctor.

http://kennethkee.info/blog/family-...ly-doctors-tale-chronic-fatigue-syndrome.html

We could leave a comment to let him know that what he is describing is CF not CFS?

My turn to pitch in - it is done.

 

[TinyT]

Where did he get his information from? Patients avoid socializing? WTF?!?!?

Will try to add a comment too.

 

[TinyT]

Comment made:

Hello Family Doctor,

First, thankyou for drawing attention to a very prevalent, but not well known of condition. Prevalence estimates are from 235-700 per 100,000. ME/CFS affects all socio-economic, ethnic groups and both sexes. ME/CFS is more prevalent that AIDS, lung or breast cancer.

However, I am concerned by your description of the etiology, symptoms, treatment and prognosis of ME/CFS. ME is classified as a disorder of the central nervous system by the World Health Organisation. ME/CFS is characterised by neurological, immunological, cardiovascular, gastrointestinal and musculoskeletal features. There are over 4000 studies showing the biomedical abnormalities of ME/CFS including chronic immune system activation and dysfunction, abnormal immuno-genetic expression, brain & CNS dysfunction and abnormalities, abnormal neuro-genetic expression, endocrine impaired activation and abnormalities, heart and circulatory system dysfunction, muscular structural and biochemical abnormalities as well as gastrointestinal dysfunction, mitrochondrial dysfunciton and channelopathy (ME/CFS society of WA, 2007).

I have included some links for your information and reference.

This is from Dr. Jose Montoya, Associate Professor of Medicine, Division of Infectious Diseases at Stanford University. In this video he dicussed CFS and current research regarding diagnosis and treatment and the possible CFS-infection connection. http://www.youtube.com/watch?v=Riybtt6SChU

Here is a link to the videos from the recent NIH: State of Knowledge Conference http://videocast.nih.gov/PastEvents.asp?c=0&s=21 and here is a list of the presenters and topics http://orwh.od.nih.gov/CSF 2011/newsEvents.htm

Here are two concise summaries of biomedical abnormalities and research findings in ME/CFS.

http://esme-eu.com/resources-guidelines/ten-discoveries-about-the-biology-of-cfs-article35-112.html

http://www.mecfswa.org.au/UserDir/Documents/Biomedical Review.pdf

Both of the above reviews are several years old, with significant medical research findings in ME/CFS since then. You will find these detailed in the NIH: State of Knowledge conference.

Regards,

 

[Tulip]

Good post tinyt! I didn't end up making one, I was too cranky. I wonder if any of the comments will make the website?.

 

[TinyT]

Thanks Tuliip. I hope that some comments make the website. Or at least make 'the family doctor' think twice about the misinformation he is putting up.

I got motivated tonight and also made two big comments to the ABC website re- their PACE trial interview. Hopefully I'll see them up soon too!

 

[Boule de feu]

Good job, TinyT!

Comment made:

This is brilliant and right to the point.
Thank you for helping me in this.
What bothers me is that it is coming from a doctor. =-(

 

[Boule de feu]

I left him a friendly note referring him to the Canadian Consensus Guidelines and the Fukuda criteria. I thought I'd try education rather than bludgeoning, since he may well be just repeating what he was taught in med school. Maybe he'll be interested in learning something more accurate. Hope springs eternal. And if he isn't interested in learning what it really is, nothing we say is apt to change his mind.

Good thinking.
I believe that giving him a friendly heads-up is the way to go. =-)
We don't want him to become our enemy, for sure.

 

[TinyT]

This is brilliant and right to the point.
Thank you for helping me in this.
What bothers me is that it is coming from a doctor. =-(

No worries! Glad to help.

It is a worry that this is coming from a doctor. I haven't seen any comments come up yet.

 

[Boule de feu]

Let's hope that this will make him revise his blog.

 

[Boule de feu]

NEW ! - NEW ! - NEW !

WE DID IT! WE DID IT!
He did apologize and agrees that our comments are true.
CFS is not CF.

We can make a difference. ONE DOCTOR or future doctor at a time! =-)

Thank you everyone for this. It made my day.

 

[justinreilly]

Boule de feu,
pls edit your first post to add the new URL and a note that it's been changed. I didn't read your last comment and went to the old url which hasn't been changed and posted.
New URL:
http://kennethkee.info/blog/medical-case-studies/a-family-doctors-tale-chronic-fatigue-syndrome.html

 

[Boule de feu]

Done!

Boule de feu,
pls edit your first post to add the new URL and a note that it's been changed. I didn't read your last comment and went to the old url which hasn't been changed and posted.
New URL:
http://kennethkee.info/blog/medical-case-studies/a-family-doctors-tale-chronic-fatigue-syndrome.html

It will be my pleasure to edit this post.

 

[WillowJ]

good work!

 

[TinyT]

Yes! Go team!

 

[ixchelkali]

Hmm, it seems to have reverted. Most of the comments, as well as the doctor's reply and corrections have disappeared, and it's back to its original version. Wonder what happened?

 

[Dainty]

Woohooo! Great job, everyone! This really made my night.

Hmm, it seems to have reverted. Most of the comments, as well as the doctor's reply and corrections have disappeared, and it's back to its original version. Wonder what happened?

Is that true for the second link given?

 

[TinyT]

Hmm, it seems to have reverted. Most of the comments, as well as the doctor's reply and corrections have disappeared, and it's back to its original version. Wonder what happened?

If you go to the website & do a search for 'chronic fatigue syndrome' it'll find the post with alterations and comments still there