HHS already spruiking the benefits of CBT and GET

[RustyJ]

Though the subject matter may be familiar, the source may come as a surprise, at least to some. The HHS is 'coming out' about its support for CBT and GET - thanks to the support of patients who helped legitimize P2P and IOM.

Many with condition are afraid exercise will make the condition worse.

Therapists Must Ease Patients' Fear When Treating Chronic Fatigue Syndrome: Study
WEDNESDAY, Jan. 14, 2015 (HealthDay News) -- Easing fears that exercise may worsen symptoms of chronic fatigue syndrome is crucial in efforts to prevent disability in people with the condition, a new study says.

Chronic fatigue syndrome is a complex condition, characterized by overwhelming fatigue that is not improved by bed rest, according to the U.S. Centers for Disease Control and Prevention. Treatments are aimed at reducing patients' fatigue and improving physical function, such as the ability to walk and do everyday tasks.

A previous study found that people with chronic fatigue syndrome benefit from two types of counseling: cognitive behavioral therapy, or graded exercise therapy, a personalized and gradually increasing exercise program.

This new study looked at how the two approaches can help patients. "By identifying the mechanisms whereby some patients benefit from treatment, we hope that this will allow treatments to be developed, improved or optimized," said study leader Trudie Chalder, a professor of cognitive behavioral psychotherapy at King's College London in England.

http://healthfinder.gov/News/Article.aspx?id=695460

 

[Roy S]

Note -- this is the start of a merged thread with 8 replies titled "US governments HHS website spreads UK SMC PACE propaganda"
　
This is now on a US Health and Human Services website!
　
　
"Therapists Must Ease Patients' Fear When Treating Chronic Fatigue Syndrome: Study
　
Many with condition are afraid exercise will make the condition worse.
　
WEDNESDAY, Jan. 14, 2015 (HealthDay News) -- Easing fears that exercise may worsen symptoms of chronic fatigue syndrome is crucial in efforts to prevent disability in people with condition, a new study says."
　
http://healthfinder.gov/News/Articl...ivery&utm_medium=email&utm_source=govdelivery


This brings to mind a cartoon I have saved. Betsy Ross, the famous seamstress of the original United States flag from the Revolutionary War is apparently working on her earlier version. On a monochromatic background it just has the words "Fuck Off Redcoats!"

 

[Valentijn]

I guess they didn't get the "Oxford sucks" memo.

 

[Wildcat]

.
Ever tried having a sane conversation with someone who is convinced that they have to reassure your deluded 'fears'?
.

Last year ME patients were dangerous extremists. This year we are fearful bunnies in need of reassurance and exercise. The latest propaganda makes us look like lazy pets who need to be coaxed into an exercise regime for our own good.

.

 

[RustyJ]

Note the date of publication on site.

 

[Sean]

thanks to the support of patients who helped legitimize P2P and IOM.

I think that is more than a little unfair. I don't like a lot of what is happening with those two entities, but we have few options to try to move things forward and have to take them whenever and wherever they come up, however compromised they may be.

Nonetheless, not good news, on the face of it.

 

[RustyJ]

My point, and the point of others, is that participation is not about opportunity, because the agenda was already set. The point of bureaucratic management of me and cfs is about control, not about caring for patients.

Further there is the potential to cause significant harm by legitimizing govt agenda.

I think the linked statement bears out the falseness of thinking the HHS has patient care at heart. Bear in mind that they would already have had some submissions.

The timing of the statement (the same day as the Lancet publication, I think) leaves no doubt in my mind that the HHS is trying to get a message out.

 

[WillowJ]

This is apparently from the new PACE paper, and this article linked in the OP likely has nothing to do with P2P or IOM.

 

[Nielk]

For the US government to pick this up and publish it on their official website means that they are currently endorsing this
malfeasance.
After 20 years of ME/CFS stakeholders urging the CDC to remove GET/CBT from their toolkit, this is their reply!
This is an act of betrayal.

 

[Nielk]

This is apparently from the new PACE paper, and this article linked in the OP likely has nothing to do with P2P or IOM.

For the US government to pick this up and publish it on their official website means that they are currently endorsing this
malfeasance.
After 20 years of ME/CFS stakeholders urging the CDC to remove GET/CBT from their toolkit, this is their reply!
This is an act of betrayal.

This has a lot to do with the P2P and IOM, in that it shows where the government stands and what their aims are = ME/CFS is made up in our minds!!!

 

[zzz]

For the US government to pick this up and publish it on their official website means that they are currently endorsing this
malfeasance.
After 20 years of ME/CFS stakeholders urging the CDC to remove GET/CBT from their toolkit, this is their reply!
This is an act of betrayal.

As noted in another thread, this article appeared on the HHS Web site on the same day as the publication of the Lancet article. That's a little fast for a spontaneous response, don't you think? (Although there was a press release the previous day. We seem to have become fodder for self-serving press releases.) But it's been known and documented for a long time that Simon Wessely has his tentacles deep within the NIH, and we know that HHS isn't acting independently here. Wessely's role in the creation of the 1994 Fukuda definition, helping to make sure that no single physical symptom was required for diagnosis, has also been documented. Long tentacles again.

Of course, human beings don't have tentacles. You can draw your own conclusions...

 

[biophile]

http://healthfinder.gov/News/Article.aspx?id=695460

It just looks like the above article was copied from HealthDay News (http://www.healthday.com).

The healthfinder.gov site has the following disclaimer:

HealthDayNews articles are derived from various sources and do not reflect federal policy. healthfinder.gov does not endorse opinions, products, or services that may appear in news stories. For more information on health topics in the news, visit Health News on healthfinder.gov.

HealthDay claims: "this site complies with the HONcode standard for trustworthy health information". What's that?

https://www.healthonnet.org/HONcode/Conduct.html?HONConduct864654

The Health on the Net (HON) certificate serves as a guarantee that this health website, at the date of its certification, complies with and pledges to honor the 8 principles of the HON Code of Conduct as drawn up by the HON foundation.

This part was amusing:

"The HealthDay News Service is in compliance with the HONcode: Validity of certificate 21 Nov 2012 - Nov 2014"

HONcode (http://www.healthonnet.org/HONcode/Conduct.html) has 8 principles, of which #5 seems most relevant:

5. Justifiability

Any claims relating to the benefits/performance of a specific treatment, commercial product or service will be supported by appropriate, balanced evidence in the manner outlined above in Principle 4.

4. Attribution

Where appropriate, information contained on this site will be supported by clear references to source data and, where possible, have specific HTML links to that data. The date when a clinical page was last modified will be clearly displayed (e.g. at the bottom of the page).

Back to the article, don't you just love their idea of "balance" i.e. quoting Knoop and Wiborg for an alternative interpretation:

"Other experts came to a somewhat different conclusion. ..."

 

[biophile]

http://healthfinder.gov/News/Article.aspx?id=695460

It just looks like the above article was copied from HealthDay News (http://www.healthday.com).

The healthfinder.gov site has the following disclaimer:

HealthDayNews articles are derived from various sources and do not reflect federal policy. healthfinder.gov does not endorse opinions, products, or services that may appear in news stories. For more information on health topics in the news, visit Health News on healthfinder.gov.

HealthDay claims: "this site complies with the HONcode standard for trustworthy health information". What's that?

https://www.healthonnet.org/HONcode/Conduct.html?HONConduct864654

The Health on the Net (HON) certificate serves as a guarantee that this health website, at the date of its certification, complies with and pledges to honor the 8 principles of the HON Code of Conduct as drawn up by the HON foundation.

This part was amusing:

"The HealthDay News Service is in compliance with the HONcode: Validity of certificate 21 Nov 2012 - Nov 2014"

HONcode (http://www.healthonnet.org/HONcode/Conduct.html) has 8 principles, of which #5 seems most relevant:

5. Justifiability

Any claims relating to the benefits/performance of a specific treatment, commercial product or service will be supported by appropriate, balanced evidence in the manner outlined above in Principle 4.

4. Attribution

Where appropriate, information contained on this site will be supported by clear references to source data and, where possible, have specific HTML links to that data. The date when a clinical page was last modified will be clearly displayed (e.g. at the bottom of the page).

Back to the article, don't you just love their idea of "balance" i.e. quoting Knoop and Wiborg for an alternative interpretation:

"Other experts came to a somewhat different conclusion. ..."

 

[Nielk]

When doing a search on Healthfinder.gov for Chronic Fatigue syndrome or ME/CFS, this is the only study listed. The other links are to the CFIDS Association.

why would they specifically single out this study to promote on their website?

 

[Nielk]

It seems like there is a duplicate thread HERE.

@Kina @Sushi - Can a moderator merge these two threads please? Thank you.

Moderator Note: Threads merged--the second thread posted merges into the first.

 

[jimells]

Does anyone still think the P2P report will be used by HHS to actually help patients?

 

[Roy S]

It seems like there is a duplicate thread HERE.

@Kina @Sushi - Can a moderator merge these two threads please? Thank you.

Moderator Note: Threads merged--the second thread posted merges into the first.

@Kina @Sushi
In my opinion the merged thread is now too confusing to follow and was better as two separate threads. Could you at least put a note at the top of my first message from the thread that it was merged into this, please?

 

[Nielk]

Does anyone still think the P2P report will be used by HHS to actually help patients?

I think that the P2P will change everything for us. The NIH will look at the P2P final report and say: "Wow, we had no idea that:"

· There was so little funding for ME/CFS in all these years compared to other diseases
· ME/CFS exists
· Patients have been neglected and misunderstood
· There are 1 million patients and the financial burden is in the billions
· We need studies in gut microbiome, in severe patients, in pediatric patients
· We need centers of excellence
· We need a biobank
· There has been limited professional training
· Current studies are too small
· We need to develop case definition

We never heard this from stakeholders, patients, advocates, clinicians and researchers and especially not from CFSAC.

We are especially glad to have spent a million dollars in order for a panel of 5 non-experts to provide this crucial, previously unknown information in a report to us.

Now that we know this information, we will quickly act upon them because as we have repeatedly stated, we care about the patient.

 

[Roy S]

It looks to me like the piece started with the PACE people who collaborated with the SMC people who fed it to the Healthday News Service which is subscribed to by healthfinder.gov which reprinted it.

A SMC is reportedly going to be opened in the United States in 2016.

 

[Esther12]

I think that the P2P will change everything for us. The NIH will look at the P2P final report and say: "Wow, we had no idea that:"

LOL - I'm not as negative about the process as some, but definitely have concerns, and it does seem absurd to think that this process will lead to any new knowledge being uncovered.

Also though, bureaucracies can be so ridiculous that they need to pay a million dollars to have obvious things written in a report before they can act on them.