The Atlantic Posts Superb Article on ME/CFS

[Hello!]

http://www.theatlantic.com/health/a...gue-patients-push-for-an-elusive-cure/409534/

 

[JennyJenny]

http://www.theatlantic.com/health/a...gue-patients-push-for-an-elusive-cure/409534/

Thanks for posting and I am e-mailing them to scold them for calling it Chronic Fatigue.

 

[Hello!]

You might consider rewarding them for the article, rather than critiquing them. I don't like the name either, but, we want them on our side!

 

[JennyJenny]

You might consider rewarding them for the article, rather than critiquing them. I don't like the name either, but, we want them on our side!

I am e-mailing them to let them know why people don't take us seriously. Too many have claimed they overcame their CF and the entire medical community is not recognizing this grossly misnamed disease.

The one thing my doctor said to me prior to going through diagnosis was, did your Rheumatologist say to you you had Chronic Fatigue or Chronic Fatigue Syndrome. CFS is on my disability paperwork. If it were CF I may not have been awarded disability. I always thank them for the article but correct them and this is the second time a major article (the last was by Dr. Sanjay Gupta) that they put CF right in the title. It has to stop.

And I have sent Tweets to The Atlantic on several occasions on this illness. The Palo Alto Invisible Illness video and probably the Washington Post article and the patient they speak about in this article. I tweet and e-mail hundreds of media, whether written, TV, anchors, doctors (including Sanjay Gupta), medical journals for some time now and when they post CF and not CFS or have a bad picture of a "patient" I let them know.

 

[Hello!]

Just finished the article. It's not perfect. In fact it's really bugging me. It's as if a passive aggressive frenimy of Brian Vastag wrote it. Just reading the comments now. Ouch! I will carefully compose a response knowing that it will shape how others will perceive the disease and those with it.

 

[Hello!]

Oh, it's now the number one most popular article on The Atlantic site!

 

[JennyJenny]

Oh, it's now the number one most popular article on The Atlantic site!

That is good. That happens whenever an ME/CFS article is written. NY Times, USA Today, on and on. A lot of bickering and such in the comments but these articles do tend to go through the roof and when Ryan Prior wrote his article in USA Today and got the response he did it propelled him to make his documentary.

As long as we get involved in the comment section ourselves and give good information, we can support and shape the dialogue.

Thanks for posting the article.

 

[Hello!]

The comments can be voted up or down. Now there's a bonus.

 

[JennyJenny]

The comments can be voted up or down. Now there's a bonus.

They corrected the title name and put CFS!

 

[Snookum96]

They corrected the title name and put CFS!

I just went to read the article and noticed that!

Nice work @JennyJenny

 

[Cort]

Well done Jenny!

We are really getting somewhere. What a superb article this is.... the last in a string of them. Journalists are finding what a great topic this is - it's a mysterious disease, it wipes out young healthy people - the stories are just incredible - and it's not getting any funding - and EVERY story is mentioning that.

We are on a media roll: how can the NIH continue as they are like this? It's embarrassing as heck.

 

[Cort]

My god what a moron that guy is but it made me think about this argument regarding psychiatry

• Well I hardly expect your neurologist wife to be an expert on this condition but I suggest that she review the literature first. She also might want to talk to another neurologist - Ben Natelson - who has been studying this condition and treating patients for many years. He does not believe this is a psychiatric condition and he has study after study to prove it.
  
  In fact evidence of immune abnormalities, autonomic nervous system dysfunction, metabolic abnormalities, low blood volume, brain lactate levels, complement activation during exercise, HPA axis problems and much more have all been found in ME/CFS.
  
  Again if you want a review of the literature you might want to check out the IOM and P2P reports - both of which urgently called for more physiological research into this condition.
  
  I would also note that because of the widespread ignorance of neurologists like your wife (and yourself) and others in the medical profession virtually everyone with ME/CFS sees psychiatrists during their travels attempting to get a diagnosis.
  
  Everyone gets shunted to one. Virtually everyone tries one out and it doesn't work. So there's no need to give the advice you're giving. It;s already being given thousands of times every day in doctor's offices. It just doesn't work - which is why stories like the one in the Atlantic are appearing and will continue to appear - so long as views like your wife's prevail.
  
  These patients, by the way, are typically referred to in the medical profession as "treatment resistant" depression patients.
  

 

[JennyJenny]

My god what a moron that guy is but it made me think about this argument regarding psychiatry

See what a little bit of misinformation and no empathy buys, Zero depth.

As the saying goes, water seeks its own level. He and his wife will be forever thirsty.

 

[Cort]

See what a little bit of misinformation and no empathy buys, Zero depth.

As the saying goes, water seeks its own level. He and his wife will be forever thirsty.

Nicely said