TONIGHT (2/22) / TOMORROW -- Tell Katie Couric your opinion of PACE!

[Hope123]

ALL HANDS ON DECK!

I've been told by 2 people that Katie Couric will be reporting on the UK PACE trials tomorrow on CBS Evening News. This will be the first national evening news report I've seen in years on ME/CFS.

We do not know what angle Katie will take or how balanced her report will be but YOU can try to make it more balanced. Write or call CBS Evening News tonight or tomorrow and tell them your concerns about the PACE trial. In particular, share your non-improvement or deterioration with graded exercise therapy or cognitive behavioral therapy. Tell her you do not fit the Oxford criteria (which is not used by the majority of ME/CFS researchers and stresses fatigue without the specific inclusion of other symptoms), you have more symptoms than just fatigue, and therefore, the PACE results do not apply to you.

Refer her to ME/CFS researchers like the Alan/ Kathy Light at the Unversity of Utah, Dr. Leonard Jason (DePaul University, Chicago), Dr. Nancy Klimas (the University of Miami), Dr. Chris Snell (University of the Pacific, California) to talk about what happens biologically to ME/CFS patients when they exercise.

Go team! [cheerleading icon here]

CBS Contact info:

http://www.cbsnews.com/stories/1998/08/01/eveningnews/main15216.shtml?tag=hdr;cnav

[Note: even if the story gets moved to another day, at least CBS will be left with a story they might follow and this is a chance to counteract the damaging media reports we have already encountered]

[Feel free to copy and re-post this message elsewhere without my user name! Thanks!]

 

[SpecialK82]

Great Idea Hope!!

We could turn this into an opportunity for the spotlight if we can act quickly. If anyone has any videos about CFS and it's devastation - maybe we could get that on the air too.

 

[justinreilly]

can we line up an MD or researcher, not Klimas, to tell it like it is? I have contacted MCWPA about this and the Klimas point.

 

[monobear]

I have a bad feeling about this...must stay positive. Will do my best to write a full letter.

 

[Hope123]

I want to encourage everyone and anyone to write in, even if it's something as simple as "I have Chronic Fatigue Syndrome and cognitive therapy/ exercise therapy did not worked for me. In fact, exercise worsens my health."

If you can write more, go for it.
If you can't give a coherent scientific argument for why it doesn't work for you, don't worry about it. Remember, reporters LIKE a personal down-to-earth angle and you can always refer them to the researchers above.

Another angle: ask them why if PACE works so well, English patients, who have treated with cognitive and exercise therapy for years are no better and some are worse off. Refer them to what UK patient groups released on PACE:

http://www.afme.org.uk/news.asp?newsid=1047
http://www.meassociation.org.uk/?p=4607

How about 11 international surveys with thousands of people answering where an average of 51% of respondents said exercise therapy harmed their health?

http://www.mecfs-vic.org.au/sites/w...Resource-Kindlons5YrStratPlanCFS-June2009.pdf

 

[justinreilly]

Thanks Hope!

More patient data showing GET to be the most harmful "therapy" of all:
http://curetogether.com/blog/2011/0...helps-patients-with-chronic-fatigue-syndrome/

 

[justinreilly]

I encourage you to:

- call CBS Evening News at (212) 975-3247 or

- email your own letter or you can use mine in whole or part:

To: evening@cbsnews.com; investigates@cbsnews.com; scams@cbsnews.com

Dear CBS Evening News,

I heard that you might be reporting on the PACE study out of the UK NHS on "CFS". Wanted to let you know it's a scam to avoid paying insurance and disability.

How they ran the scam:
(1) They studied Idiopathically Chronically Fatigued people with no neurological illness (using the study author Michael Sharpe's invalid Sharpe/"Oxford" "CFS" definition). ME (aka "CFS") has been recognized by WHO in it's ICD under neurological diseases (G93.3) since 1969.
pls see: ICD 93 Other Disorders of the Brain: http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g93

(2) The cardinal feature of ME ("CFS") is Post-Exertional Malaise/Morbidity which means that if you exercise the disease gets worse.
pls see: Canadian Consensus Criteria for ME/CFS: [/color]http://www.mefmaction.net/documents/journal.pdf

(3) The studied what they called "adaptive pacing" which is different from the "pacing" that, in their press release, they criticized patient groups for recommending. "Pacing" means staying inside one's "energy envelope." The so-called "adaptive pacing" which their study says is ineffective says you have to rest at specific times for specific periods and can't take naps. They then claimed this meant that "pacing" (staying within one's energy envelope) was ineffective and should not be done.

(4) Their version of CBT is focused on telling the patient he does not have a physical illness and that the only way to get better is to start exercising and then keep ratcheting up the exercise amounts- exactly the most harmful thing a pwME can do due to PEM, ie the fact that exercise makes the disease worse. Here are the three definitive sources on the PACE trial:

- the blog post on the topic by Hillary Johnson, author of Osler's Web (the History of ME ("CFS") in the US):
http://oslersweb.com/blog.htm?post=774136

- the Response by Prof. Hooper hosted by the Lancet:
http://www.meactionuk.org.uk/Hooper-response-to-PACE-Trial-Press-Release.htm

- Invest in ME statement:
http://www.investinme.org/IIME Statement 2011-02-01.htm

The fake 'science' on ME ("CFS") is a very important and fascinating story of which this is only the latest example. Please contact me if you would like to discuss the above or have any questions. Thank you for your consideration.

Sincerely,

 

[usedtobeperkytina]

Mcwpa

MCWPA has a bulletin on it.

http://apps.facebook.com/causes/posts/668486?m=90525af8

 

[Cort]

Its up on the Front page with a few more juicy details.....

http://forums.aboutmecfs.org/content.php?371-CFS-CBS-News-Katie-Couric-Klimas-PACE

 

[acer2000]

This really cannot be a balanced story unless they interview Dr. Mikovits, Dr. Lombardi, or one of the people who did the science paper. Thats what started this recent round of attention and has generated lots of research over the past year. I really hope the WPI has contacted them - who is their PR person now? Can someone alert them? I can't imagine they don't know about this... but honestly, I don't assume anything anymore.

 

[Michelle]

Here's the email I'm sending. If we can all use the same sentence (or nearly the same) i.e. "in the largest trial of CBT and GET ever, results were minimal or non-existant" it will send an easy and united message.


Dear Producer:

With regard to your possible segment on the recent PACE ME/CFS study out of the UK, please note the following:

In the largest CBT and GET trial ever, the PACE study demonstrated that improvements to patients with Chronic Fatigue Syndrome were minimal or non-existant, despite claims of far greater success.

Indeed in their discussion section, the lead author of the PACE trial, Peter D White, concedes that Our finding that studied treatments were only moderately effective also suggests research into more effective treatments is needed. The effectiveness of behavioural treatments does not imply that the condition is psychological in nature.

Patient advocate, Cort Johnson, argues that the results were less than "moderately effective" in an in-depth analysis at the popular Chronic Fatigue Syndrome site "Phoenix Rising" entitled, "A Hitch in its Step: PACE Trial Indicates CBT/GET No Cure For CFS, 60% of Patients Show No Significant Effects"

(http://forums.aboutmecfs.org/content.php?369-A-Hitch-in-its-Step)

He points out that in the one completely objective measure in the study -- a walking test -- patients who were considered to have "improved" increased their walking speed from "puttering around the house" to *just above* puttering around the house but did not even reach the level of "easy healthy walking."

"The fact that it has often been characterized as a cure by CBT therapists," says Johnson, "has deformed the field and the public understanding of the disorder and caused resources to be misapplied."

Earlier research by Leonard Jason at DePaul University (Jason et al 2009) and Staci Stevens at the University of the Pacific (VanNess et al 2006) suggest that Chronic Fatigue Syndrome (CFS - also known as Myalgic Encephalomeylitis or ME) patients are far more limited in their physical capacities than PACE authors would like to admit, with Stevens showing marked impairment in the ability of patients to utilize oxygen, and Dr. Jason suggesting improvements are far more likely with a program more tailored to a patient's abilities or "energy envelope."

Given that the UK group, which used a more lenient definition of Chronic Fatigue Syndrome (known as the "Oxford Criteria") may well have included patients with primary Fibromyalgia, a disorder that actually improves with graded exercise therapy, it's difficult to say what, if anything, these results mean.

Best,
Michelle Strausbaugh
Portland, Oregon
Former aspiring academic and ME/CFS patient for 12 years

(P.S. I'm so gonna pay this tomorrow...)

 

[Marco]

This study was mentioned in comments made on the press coverage and I thought it was worth following up.

Apologies if this has already been posted.


In a study entitled "Six minute walking distance in healthy elderly subjects" (50-85 yrs), the mean walking distance in 6 minutes was 631m!

Six minute walking distance in healthy elderly subjects
T. Troosters, R. Gosselink, M. Decramer

http://www.ersj.org.uk/content/14/2/270.full.pdf


"The predicted and actual measured walking distances ranged 468782 m and 383 820 m, respectively. When the regression equation is used, a walking distance <82% pred can be considered abnormal. Using 700 m as the predicted walking distance would, in this population of healthy elderly patients, result in a walking distance of 9013% pred on average. An abnormal walking distance (outside the 95% confidence interval) would be 64% pred or 518 m in the studied population sample."


In the PACE trial results, the mean walking distance in 6 minutes was 379m and 354m after patients received GET and CBT respectively.

So after treatment with CBT or GET, these patients still had very much lower physical functioning than that considered abnormal (518m) for an elderly cohort (50-85 yrs) and in fact lower than the range extreme found in this cohort (383m and strongly correlated with age).

 

[eric_s]

Lol Marco Very well done!!!! Now this is the sort of argument i think we need. Thanks. We should always use this study to compare, in case there's not some error with this argumentation that i'm not aware of. Very valuable!

 

[eric_s]

Those intellectually challenged people don't manage to get us better than a group of elderly and claim we should use their methods... And the media picks it up... God, please let it rain brains :headache:



I hope there is an ME/CFS organisation in contact with this station now and prepared. We can't have another failure. We must get our message across in this programme.

 

[Marco]

I have just posted this to the CBS feedback page :

http://www.cbsnews.com/htdocs/feedback/fb_news_form.shtml?tag=ftr





Dear CBS Evening News

I believe that you will be broadcasting a segment on chronic fatigue syndrome (also known as Myalgic Encephalomyelitis, ME) and will be discussing the recent results from the UK PACE trial.

No doubt your researchers will have come across many news reports of these results with headlines suggesting that 'talk therapy and exercise' can greatly improve or even cure ME/CFS.

The reality is somewhat different.

Even the authors of the PACE study have admitted that any benefits found are 'modest' but even these modest successes may be illusory. The vast majority of the measures used to gauge the impact of the various treatments are based on subjective self response to questionnaires and two arms of the trial (CBT and Graded Exercise) encourage participants to see their illness as psychological and full reversible.


However, one of the few objective measures used was the 6 minute walk test.

The PACE trial reports that, following therapy, the mean walking distance in 6 minutes was 379m (312 before treatment) and 354m (333m before treatment) after patients received GET and CBT respectively.

To put these results into context I would draw your attention to the following study Six minute walking distance in healthy elderly subjects", in which the mean walking distance in 6 minutes was 631m for a cohort of those aged (50-85 years of age)!


Six minute walking distance in healthy elderly subjects
T. Troosters, R. Gosselink, M. Decramer

http://www.ersj.org.uk/content/14/2/270.full.pdf


"The predicted and actual measured walking distances ranged 468782 m and 383 820 m, respectively. When the regression equation is used, a walking distance <82% pred can be considered abnormal. Using 700 m as the predicted walking distance would, in this population of healthy elderly patients, result in a walking distance of 9013% pred on average. An abnormal walking distance (outside the 95% confidence interval) would be 64% pred or 518 m in the studied population sample."


I will repeat. In the PACE trial results, the mean walking distance in 6 minutes was 379m and 354m after patients received GET and CBT respectively.

So after treatment with CBT or GET, these patients (average age of 38) still had very much lower physical functioning than that considered abnormal (518m) for an elderly cohort (50-85 yrs) and in fact, on average, scored lower than the lowest extreme of the range found in this cohort (383m).

By any reasonable reckoning, a therapy that leaves participants with a level of physical functioning well below that considered abnormal for elderly people, can not be considered as an 'evidence based' viable therapy. While any marginal improvements found may be shown to be 'statistically significant', I very much doubt whether many clinicians or patients would find them of clinical significance and certainly not a cure!

Yours sincerely

Name and address supplied

 

[Yogi]

I encourage you to:

- call CBS Evening News at (212) 975-3247 or

- email your own letter or you can use mine in whole or part:

To: evening@cbsnews.com; investigates@cbsnews.com; scams@cbsnews.com
Dear CBS Evening News,

I heard that you might be reporting on the PACE study out of the UK NHS on "CFS". Wanted to let you know it's a scam to avoid paying insurance and disability.

How they ran the scam:
(1) They studied Idiopathically Chronically Fatigued people with no neurological illness (using the study author Michael Sharpe's invalid Sharpe/"Oxford" "CFS" definition). ME (aka "CFS") has been recognized by WHO in it's ICD under neurological diseases (G93.3) since 1969.
pls see: ICD 93 Other Disorders of the Brain: http://apps.who.int/classifications/.../?gg90.htm+g93

(2) The cardinal feature of ME ("CFS") is Post-Exertional Malaise/Morbidity which means that if you exercise the disease gets worse.
pls see: Canadian Consensus Criteria for ME/CFS: [/color]http://www.mefmaction.net/documents/journal.pdf

(3) The studied what they called "adaptive pacing" which is different from the "pacing" that, in their press release, they criticized patient groups for recommending. "Pacing" means staying inside one's "energy envelope." The so-called "adaptive pacing" which their study says is ineffective says you have to rest at specific times for specific periods and can't take naps. They then claimed this meant that "pacing" (staying within one's energy envelope) was ineffective and should not be done.

(4) Their version of CBT is focused on telling the patient he does not have a physical illness and that the only way to get better is to start exercising and then keep ratcheting up the exercise amounts- exactly the most harmful thing a pwME can do due to PEM, ie the fact that exercise makes the disease worse. Here are the three definitive sources on the PACE trial:

- the blog post on the topic by Hillary Johnson, author of Osler's Web (the History of ME ("CFS") in the US):
http://oslersweb.com/blog.htm?post=774136

- the Response by Prof. Hooper hosted by the Lancet:
http://www.meactionuk.org.uk/Hooper-...ss-Release.htm

- Invest in ME statement:
http://www.investinme.org/IIME Sta...2011-02-01.htm

The fake 'science' on ME ("CFS") is a very important and fascinating story of which this is only the latest example. Please contact me if you would like to discuss the above or have any questions. Thank you for your consideration.

Sincerely,

This is an excellent letter. it is short and to the point. Well Done Justin Reilly! I WOULD ALSO SEND A COPY OR LINK TO MAGICAL MEDICINE BY PROF HOOPER so that Katy Couric can investigate further.

www.meactionuk.org.uk/magical-medicine.pdf

www.investinme.org/Article400 Magical Medicine.htm

 

[eric_s]

Very good, thank you. Somebody else might also mention Nunez et al. (http://www.ncbi.nlm.nih.gov/pubmed/21234629, http://forums.aboutmecfs.org/showth...GET-studied-in-Fukuda-CFS-outcome-as-expected) and explain that the difference in outcome might be due to cohort selection (different criteria being used). I can't do it at the moment, i have too many other things right now.

 

[justinreilly]

Worried about Klimas

I didn't know Klimas was going to be prominently featured. I am extremely concerned about her speaking about CBT and GET. She didn't do that much better than CAA in her press comments on the PACE trial. She did mention working within the energy envelope. But, like McCleary she agreed with Peter White that (the evil version of) CBT and GET studied were moderately beneficial.

http://health.usnews.com/health-new...-help-fight-chronic-fatigue-syndrome?PageNr=1

emphasis added

White noted that all the treatments were equally safe, and serious reactions were rare.

"Patients now have a choice of two moderately effective and safe treatments that can help them towards a healthier life," he said.

Dr. Nancy Klimas, chief medical officer at the Chronic Fatigue Center at the University of Miami Miller School of Medicine, noted that the merits of various therapeutic approaches to chronic fatigue syndrome are still a matter of debate.

"But here Dr. White is saying that cognitive behavioral therapy and graded exercise are moderately helpful, but not curative," she said. "And I would agree with that."

"On the other hand, it's also important to note that when we talk about helping patients increase their activity levels, we're talking about people who have very limited amounts of energy," Klimas added. "And you have to work within this 'energy envelope,' because if you push beyond the threshold they will relapse. So often, what we're talking about is about five minutes of exercise before taking a rest."

"In any case, I look at this as a first step," she said, "and anticipate more effective therapies, based on a better understanding of the biology of the illness, in the future."

http://www.medicinenet.com/script/main/art.asp?articlekey=126110

emphasis added

CBT, Exercise Part of CFS Treatment

Nancy G. Klimas, MD, professor of medicine, microbiology, and immunology and director of the Chronic Fatigue Syndrome Research Center at the University of Miami Miller School of Medicine, says that CBT and exercise can be an important part of the treatment for CFS but should not be looked at as a cure-all.

"If this helps them a little, that's great, and if we can find something that gets at the underpinnings of the illness itself, that's great as well," she says.

In the U.K., where the study was conducted, CBT and exercise are both recommended in national treatment guidelines, and are all that are offered to people with CFS there, she says.

"If you come to see me for CFS, I can give you CBT and exercise, but that is not my primary focus," Klimas says. "I will look at your sleep disorders, check your immune function, and look for and treat active infections that are treatable."

There is a reason people are extremely mad at McCleary for saying these type of things: they are not true and they really harm us. This study will probably result in a lot of iatrogenic morbidity and mortality.

GET and the evil version of CBT are clearly harmful, NOT BENEFICIAL for ME ("CFS"). This MUST be stated unequivically. These are the usual lies from White and Sharpe. It is just as unacceptable for her to back up their lies as it is for CAA to do so.

As urbantravels reminded us, this version of CBT is the one where the patients are told they have no physical illness and that they have a phobia of movement and that the only proven treatment for ME is to get over this fear of movement and constantly ratchet up their exercise. This is, as we know, the exact opposite of an effective, safe and ethical treatment.

 

[Carryon]

Folks! The Katie Couric interview is not about the Pace trials! E-mailing her will only alert them to that fact!

CAA - CFS will be featured tonight on “The CBS Evening News with Katie Couric.” The report will focus on a new research study on biological markers identified in the spinal fluid of CFS patients. The study is embargoed until 5:00 p.m. We will send an analysis and links to CFIDSLink subscribers at 5:00. Note: Writing to CBS and Couric about the PACE study may only serve to shift the focus away from the exciting new report.

 

[Sing]

Carryon, How do you know this?