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Brace yourself for this tweet from HHS Office of Women's Health(OWH)

Denise

Senior Member
Messages
1,095

SB_1108

Senior Member
Messages
315
I feel like someone should clarify the difference between "chronic fatigue syndrome" and "chronic fatigue" in the comments. I would be I don't have a Twitter acct.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
I feel like someone should clarify the difference between "chronic fatigue syndrome" and "chronic fatigue" in the comments. I would be I don't have a Twitter acct.

I almost never tweet (barely know how, LOL!) but I thought I'd try. I tried to be clear without being too confrontational.

Here's my tweet (I'm ahimsa_pdx on twitter, by the way):
@womenshealth , "Chronic Fatigue" is not ME/CFS or SEID. Let's ditch the old CFS name. See IOM Report @ http://www.iom.edu/mecfs #MECFS
 
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ahimsa

ahimsa_pdx on twitter
Messages
1,921
For those without twitter accounts (and/or too much brain fog to find tweets at twitter.com) I thought I would post a few more good responses to the tweet by womenshealth:

* From jenbrea (Jennifer Brea), mentioned above by @halcyon:
.@womenshealth Chronic fatigue is not a disease! Please stop using such damaging language, especially in same breath as "it's real." #mecfs

* From pandoraorg (PANDORA organization)
@womenshealth Shame on you! Learn the difference between a symptom and #MECFS. Read the IOM report.

* From knittahknits (Jennie Spotila)
@womenshealth As the office overseeing CFSAC you should be appalled at the ignorance evident in that Tweet. #MECFS

I realized too late that I should have made my own tweet a reply so that folks could see which specific tweet I was referring to. Oh, well!
 
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Denise

Senior Member
Messages
1,095
I'm pretty sure OWH has been tweeting the same tweet for some months now. I replied to them multiple times in the past but guess they haven't gotten the message--including the findings and recommendations from the IOM.

I am sorry that no one at OWH has paid attention to your comments @catly. That's not a good thing.
I was unaware of the tweet until today...
Because HHS likely has not determined what the next steps regarding the findings and recommendations from the IOM, they would be unable to use info from the IOM report because that would appear to be an endorsement of the report.
 

catly

Senior Member
Messages
284
Location
outside of NYC
Haven't been on twitter lately but I was able to go back and check my previous tweets and found that I did reply to the same tweet from OWH on 12/15/14, with the same link to the usa.gov website. So, yeah, they must be recycling their tweets despite previous responses and updated news--like the IOM report that was commissioned by umm--them HHS. Typical for the government.
 

oceiv

Senior Member
Messages
259
Thank you to those who corrected the misinformation in the tweet.

Haven't been on twitter lately but I was able to go back and check my previous tweets and found that I did reply to the same tweet from OWH on 12/15/14, with the same link to the usa.gov website. So, yeah, they must be recycling their tweets despite previous responses and updated news--like the IOM report that was commissioned by umm--them HHS. Typical for the government.

If they are recycling tweets, it's possible that they are using a program to automate their tweets. This might mean that there is no actual person is tweeting live and therefore there is no one to see and respond to tweets. Or alternately, it could be a hired contractor or social media person who cranks out tweets on a schedule but is not tasked with responding.

But it's still important to correct misinformation for the other people who read the OWH tweets.
 
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ahimsa

ahimsa_pdx on twitter
Messages
1,921
But it's still important to correct misinformation for the other people who read the OWH tweets
Yes, I think that's right. Maybe the OWH is not going to do anything about it or will be very slow to respond. But at least we can do our small part to correct the misinformation.

Many thanks to @Denise and all the other folks who monitor these tweets and other forms of communication.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
I saw on another forum thread that womenshealth has apologized for the incorrect tweet:
(note: AFAIK, @womenshealth previously apologised for and removed a tweet that used 'chronic fatigue': "#Chronicfatigue is real, and women are 2–4x more likely than men to be diagnosed with it. http://go.usa.gov/zA4j #MECFS")
So our tweets did make a difference!

I thought I'd pass along this good news for those who don't follow twitter regularly.
 

Hip

Senior Member
Messages
17,979
I often use the phrase "chronic fatigue" when talking to people about my ME/CFS. It's just a convenient abbreviation. Of course I know that CF is not the same as CFS, but since you hardly hear about actual CF, it's unlikely to lead to confusion.

Comments such as:
Chronic fatigue is not a disease! Please stop using such damaging language, especially in same breath as "it's real."

Shame on you! Learn the difference between a symptom and #MECFS. Read the IOM report.

As the office overseeing CFSAC you should be appalled at the ignorance evident in that Tweet.

are in my view over the top and annally retentive. Frankly, it's irrelevant.
 
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