USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls) - next call 4 Dec 2024

https://twitter.com/user/status/1135645526744018944

https://twitter.com/user/status/1135704822613590016


eta: apparently they 'ran out of time' to answer patients questions!?? I thought that was the whole point of these calls(?)

 

I am sorry to those patients who participated expecting something useful. I wasn't there but the idea they sang a song at you is creeping me out significantly. Shame on them. I think it merits a strongly worded public letter as to what people thought of it.

 

www.meaction.net/2019/06/05/we-need-effective-strategic-and-respectful-engagement-from-cdc/

 

Infantilizing—is one way to put this. The fact that most of us are female is the reason this happens, as females in sexist, unconscious cultures get treated as if we were children. No one, including children should have their/our lives disrespected.

 

I'm still waiting for the apology that should come to the community. MEAction sent them a letter outlining why it's not OK to behave the way they did at that last call. So far (I assume) no response.

 

They have proved beyond doubt that they can provide circuses. Do they also provide bread?

 

I seriously question what they want to provide. We are not stupid but neither are they they. This is lazy, useless and insulting. People are waiting for decades and they have their finger in this pie for decades also. If this is the best they can come up with they should consult with the patient community for suggestions. We all know the value of pacing but many of us never get to the place of pacing because we are constantly over our limits from looking after our most basic needs.. And many can't even do that. I'm wary of CDC, they never go far enough, never the extra mile that they more than owe us . This effort is disheartening . It screams a lack of real interest or commitment.

 

I remember around 10 years ago, the CDC under Bill Reeves had a draft five year plan which involved trials of CBT and graded exercise therapy (also the five year plan if there was one - I saw more than one item with it). Reeves described Peter White as being very intelligent and seemed to be influenced by him. Peter White and the CBT school don’t particularly like pacing and the like. So I think things could be a lot worse.

Edited to add: there was also an external review commissioned around that time of CDC program written by Peter White, Tony Komaroff and one or two others which also I think recommended trials of CBT and GET.

 

>They told me to Meditate. Then the speaker sang... No fucking joke, she sang a song... To the tune of The Way We Were -- telling us to pace ourselves.

They record these calls, right?

 

It looks as though CDC has recently produced recordings and some transcripts of recent SEC calls.
If this call was recorded, this is where you are most likely to find it.
https://www.cdc.gov/me-cfs/programs/meetings.html

 

The latest call is not yet there.

 

I remember 10 years ago also. And of course things could be worse but I'm not exactly thankful that things are not worse. I believe that they should be a whole lot better. Can we say with any kind of certainty that meditation helps the majority of people with ME.? I don't think so If one has low blood pressure it will likely make you feel worse as meditation is known to lower BP. I'm not a highly critical person but we need to expect much more . Our lives have been devastated and that is not any kind of exaggeration.If this was an infectious disease CDC would be doing a wide reaching awareness campaign. A public awareness campaign would be costly . But it could make a great difference to the public perception of this illness. That could make a positive difference to the lives of those affected many of whom are on the receiving end of indifference and misunderstanding. The wheels in high places need to grind a lot faster before I'd be sure that they are not still comfortably sitting on the fence.

 

They spent $4,000,000+ on an awareness campaign aimed at both the public and health professionals around 2006.

 

Some info on this here: https://www.cdc.gov/media/pressrel/r061103.htm

 

It's not the public that needs to be informed, it's the medical profession. No awareness campaign will change things as long as the medical profession openly discriminates against and stigmatizes us. This is what gives the green light for the public to treat us with contempt. I've noticed this many times on social media, the cruelty of the discussion is directly proportional to how many medical professionals are involved.

So I don't know what was the point of this campaign and it clearly was a waste. Almost all of the positive comments I see from random people, and there are quite a lot, are because of a personal connection, often a family member. But awareness changes nothing if when seeking help you are treated with disrespect and told to go away and never come back. It's like advertising a promotion that the store won't honor. Weird.

 

It's not an either or situation (either education of healthcare professionals or de-stigmatization). We need both.
If it were only the healthcare profession became appropriately educated, that wouldn't wipe out the negative views the public, family members, etc have about us.

 

Sure, but the professional course correction comes first. Advising the public is useless if the official advice remains that it's not medical professionals' concern.

A few months ago when the CDC changed its information it was explicitly mentioned that it was just for informational purposes, not an official advisory. The response from medical professionals was predictable: ignore, since they didn't actually put the institution's weight behind it. Also: damn those damn activists destroying the beautiful science we depend on.

This is a completely free process, or extremely cheap since it uses already allocated-for resources. They chose not to, multiple times, because it would have had serious implications. The predictable outcome has been: nil. Nothing. Zilch. Status quo remains: if you meet an ME/CFS "patient", advise them to dance and think happy thoughts, the end; not your concern.

It's not an either/or, it's a stepped process. They skipped the only meaningful step, wasting the whole effort.

 

This is 2019 and we are still getting crumbs.