David Tuller article regarding stigma of "CfS", HHS, IOM - speaks withBurmeister

[slayadragon]

The other thing to consider here is that eventually, if we study the CCC patients, hopefully we are going to come up with biomarkers or other ways (such as the Alzheimer's testing) to figure out whether some of the people who are at a lower level of the illness actually do have the same disease.

This seems really important to me, since the vast majority of the people that I know with severe ME experienced a period of time prior to becoming really sick where they were affected by "mystery illness" but didn't yet meet the CCC.

And I would not put aside the idea that -- if toxins are involved -- some people may have the same basic condition as the CCC sufferers but manage (inadvertently or purposely) to avoid getting exposed to additional toxins to the extent that it would take to drive them deep into illness.

Whether there are 1 million people in the U.S. who currently have CCC ME/CFS, I don't know. We need more study.

But I would bet a good bit of money on the idea that there are a million people who either have CCC ME/CFS now; who have early symptoms now and eventually will end up with it; or who have early symptoms now and would end up with it if they made a few extra mistakes (like, say, moving into a really moldy house or getting a series of Hepatitis B vaccines).

Of course, I could be wrong. And until we study the CCC patients (preferably the severely affected ones) enough to be able to get a biomarker or a good test or a sensible conception of the illness, it's all going to remain a big mess.

 

[alex3619]

We don't just need a diagnostic biomarker, we need a simple and cheap diagnostic biomarker, preferably something like a blood test. The 2 day CPET may be diagnostic, but its impossible to roll out widely for a surveillance study, and at about $2000 per person would also be financially prohibitive. Similarly a spinal fluid biomarker would require specialist care, great cost, problematic ethical approval ... and lots of healthy people, or just suspected patients, having a spinal tap. I think getting people to agree to that who don't think they need one is going to be a problem. The same goes for any kind of biopsy.

 

[Valentijn]

We don't just need a diagnostic biomarker, we need a simple and cheap diagnostic biomarker, preferably something like a blood test. The 2 day CPET may be diagnostic, but its impossible to roll out widely for a surveillance study, and at about $2000 per person would also be financially prohibitive. Similarly a spinal fluid biomarker would require specialist care, great cost, problematic ethical approval ... and lots of healthy people, or just suspected patients, having a spinal tap. I think getting people to agree to that who don't think they need one is going to be a problem. The same goes for any kind of biopsy.

My opinion is that the ultimate use of the 2-day CPET should be to identify a cohort of CCC/ICC patients with PEM. Then that cohort can be intensively studied to find more practical biomarkers.

 

[alex3619]

My opinion is that the ultimate use of the 2-day CPET should be to identify a cohort of CCC/ICC patients with PEM. Then that cohort can be intensively studied to find more practical biomarkers.

Yes @Valentijn, it should be mandatory for all studies, adding substantially to cost and so limiting study size. Its a problem. Its really important this become an outcome measure for all interventions though. Too many are claiming improvement or recovery, mostly psychiatrists, when all they have is subjective questionnaires.

 

[Roy S]

David Tuller is a real journalist. I keep remembering this part of his previous long article --
Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale
23 November 2011


"Dr. Racaniello said that when he used to question colleagues about chronic fatigue syndrome, they would argue that it was an imaginary illness. "Every time I asked someone about it, they would say it doesn’t exist, it isn’t a real disease, even as recently as the past year," he said."
　
http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/
　
@Valentijn, I was going to ask you to be my Valentine but you're making entirely too much sense!

 

[OneWaySurvival]

Has anyone else noticed that David Tuller's article is being blocked on Facebook? Anyone who has shared the article on FB, check your feed...it has disappeared! Also, the FB share function is locked if you try to share from the buzzfeed.com site.

What is going on here? Does Facebook block things that are critical of the government? You wouldn't think buzzfeed disallows it, because their site offers the opportunity to share on Facebook, Twitter, etc.

 

[RustyJ]

I can still a link to my site which then goes to Buzzfeed, so if FB is trying to block, it's not working. I think there is probably a technical issue between Buzzfeed and FB.

 

[alex3619]

Has anyone else noticed that David Tuller's article is being blocked on Facebook? Anyone who has shared the article on FB, check your feed...it has disappeared! Also, the FB share function is locked if you try to share from the buzzfeed.com site.

What is going on here? Does Facebook block things that are critical of the government? You wouldn't think buzzfeed disallows it, because their site offers the opportunity to share on Facebook, Twitter, etc.

It only seems to be a problem if you use the share button on buzzfeed. People have successfully shared it by direct copying or sharing from others successful shares, apparently.

 

[OneWaySurvival]

It only seems to be a problem if you use the share button on buzzfeed. People have successfully shared it by direct copying or sharing from others successful shares, apparently.

Yes, there are always work-arounds (like manually typing or copy/pasting the URL link in your status update - which is less ideal because it no longer shows the article embedded with graphics), but why are we having to do work-arounds at all?

It was on my Facebook page one day, then gone the next. It disappeared off several other friends' sites as well (done independently from my link). It really brought the sharing of this important article to a halt, or at least slowed-down enough to hurt the advocacy effort. Have people had this problem on Facebook with other articles, who can explain why this article was systematically dropped from feeds everywhere? Is it a coincidence/technical problem or the work of a counter force against us? I'm afraid to ask Facebook out of concern they will close down my work-around too.

 

[Nielk]

Blog by Jeanette Burmeister regarding the banning of the article on Facebook:

http://thoughtsaboutme.com/2014/02/02/who-is-causing-facebook-to-block-tullers-article/

 

[Snowdrop]

Perhaps this has become a human rights issue.

I'm way out of my league on anything political but maybe some agency or news service that takes an interest in David and Goliath issues would be interested to hear about it.

Then the facebook abusers of the abuse button will have helped spread the word.

 

[justinreilly]

I don't think it would be seen as a human rights issue.

 

[Firestormm]

Update on Fb issues reposted by Wd: http://www.mecfsforums.com/index.php/topic,19188.msg158816.html#msg158816

 

[OneWaySurvival]

Blog by Jeanette Burmeister regarding the banning of the article on Facebook:

http://thoughtsaboutme.com/2014/02/02/who-is-causing-facebook-to-block-tullers-article/

This is censorship, and it is unacceptable.

Material that is patently offensive flits around just fine on Facebook, and they want to censor this ME/CFS article?

Our ability to be seen or heard is inherently difficult due to our illness that keeps us hidden away, suffering silently in dark rooms. No, I will not stand for people or organizations that aim to silence us even further!

Whoever is able, please appeal to Facebook to restore the sharing of this important article.

 

[OneWaySurvival]

Hi everyone, it took a while, but I finally found a method to appeal to Facebook. Use the following link to fill out Facebook’s “Blocked from Adding Content” form:https://www.facebook.com/help/contact/244560538958131

On the form, I provided the link to David Tuller’s article and then I submitted the following appeal:
Dear Facebook,

Someone has unjustifiably reported this article as abusive. It is not. It is the opposite. It is a public service to bring awareness and help for a suffering group of people – those of us with ME/CFS.

Your community standards regarding hate speech say, “While we encourage you to challenge ideas, institutions, events, and practices, we do not permit individuals or groups to attack others based on their race, ethnicity, national origin, religion, sex, gender, sexual orientation, disability or medical condition.”

Not only does this article satisfy and uphold your own community standards, but ironically, the person(s) who reported this article as abusive are the ones who have violated your community standards and are practicing hate speech/action by succeeding in silencing the voices of people with a disabling medical condition.

This is censorship, and it is unacceptable.

Our (people with ME/CFS) ability to be seen or heard is inherently difficult due to our illness that keeps us hidden away, suffering silently in dark rooms. Facebook’s decision to block this article only silences us further.

Please restore the sharing of this important article. Many people’s lives and well-being depend on it.

 

[Firestormm]

Update on Fb issues reposted by Wd: http://www.mecfsforums.com/index.php/topic,19188.msg158816.html#msg158816

The above is a link that indicates David Tuller is himself investigating the reported issues with Facebook.

 

[OneWaySurvival]

The above is a link that indicates David Tuller is himself investigating the reported issues with Facebook.

That is greatly encouraging, thanks for letting us know Firestormm.

I went ahead and contacted Facebook anyway, and I suggest everyone who is able do the same. We need to show our support, not just for David and his article, but for free speech regarding the challenges in our illness community.

 

[Nielk]

I just sent out a comment to Facebook as well. I told them how important this article is in raising awareness of a debilitating disease. There is nothing in this article that anyone can consider as being abusive. It is written by a very well respected NY Times writer.

 

[Bob]

I'm able to share the article on Facebook now (for the first time), so perhaps the complaints have been effective?