Saturday, February 26, 2011

Recent CBT, GET, PACE study published in Lancet

Recent CBT, GET, PACE study published in Lancet

Last week, a study on chronic fatigue syndrome was published.  It has resulted in a lot of comments, controversy and media attention. We would like to bring it to your attention because the headlines in the media do not tell the whole story and we urge you to interpret them carefully. For example, the study did not conclude, as, for example, the CBC stated (18 Feb): "Taking it easy is not the best treatment for chronic fatigue syndrome, rather exercise and behavior therapy are, a large study finds." 

The objective of the study was to compare specialist medical care alone, to specialist medical care with adaptive pacing therapy, to specialist medical care alone with cognitive behavioral therapy, to specialist medical care alone with graded exercise therapy.  The study was well conducted using a large sample.  All patients met the Oxford criteria for chronic fatigue syndrome and were recruited from six secondary-care clinics in the UK. Specialist medical care included advice about chronic fatigue syndrome, including avoidance of activity extremes, and rest and self-help strategies. 

The authors concluded that cognitive behavioral therapy and graded exercise can safely be added to standard medical care to moderately improve outcomes for chronic fatigue syndrome. Important to note, and similar to what the authors pointed out, a positive effect of cognitive therapy does not translate to the fact that these illnesses are psychological in nature.   
To understand what "moderate gains" actually means requires a careful review of the grading systems developed for this study - but on the surface it appears as if these were quite minor improvements in some symptoms. 

Furthermore, the positive effects of Adaptive Pacing should not be discounted.  Adaptive Pacing was developed for this study so it is not yet clear how that lines up with what most of us in Ontario consider PACING. Its is also unclear how a person with ME - especially as defined under Canadian Consensus i.e. including Post Exertion Malaise - would volunteer to participate in a study involving regular exercise, unless they were already quite skilled at pacing their energy. There is a need for clarification and more research.

 

MEAO will continue to monitor the study and the reaction to it and will provide a more detailed analysis in an upcoming Reaching Out.  In the meantime, if you have questions or concerns, please contact us at info@meao.ca

Editor's note: If you have opinions on CBC's coverage, its possible to send them on-line feedback. www.cbc.ca/contact/
Lydia
Lydia E.  Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518

NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA

SEPTEMBER 22 - 25, 2011










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Friday, February 25, 2011

February 25, 2011 - MESSAGE FROM LYDIA - STAY FOCUSED

 

Friday,  February 25, 2011

MESSAGE FROM LYDIA

STAY FOCUSED

My Dearest Friends:

 

The natural response to unfairness is to lash out in outrage.  Right now is such a time that after some highs some lows have come our way.  For those of us who have been around a long time, we are very familiar with those downs as in the past there were many.  This is one of those times and it means it takes more effort to stay on track.

 

There have been many reports over the past 20 years or so of possible causes of ME/CFS and FM, many treatments suggested, and we have been hailed as the laziest people around.  You know the old saying, sticks and stones may hurt the bones but words will never hurt me.  The negative reports may not be words in the normal sense but they are still the opinions of people which means other opinions and tests can be done.

 

Now, more than any other time, is the need to stay focused and not react.  Remember what we want, a standardized international definition for ME/CFS that not only clinicians but researchers would use so that the test results will be based on the right definition and be more meaningful.  As long as a researcher can select which definition to use, he or she will use one which suits his or her purpose or outcome.  The PACE Trial is a good example.

 

Another focus which is just as important is that proper research gets done and that we are all on the same page.  Researchers need to know what everyone is working on so that there can be better collaboration and quicker results and no repetition.

 

Our best defense is offence.  Get the scientific facts and let them speak for themselves.  No amount of outcry will do as much as research results.

 

Remember we have come a long way from having no information but what that also means is that some of it will be negative.  We can choose to concentrate on the negative or stay focused and remember what we are trying to accomplish.   

 

Lydia

 

Lydia
Lydia E.  Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518

NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA

SEPTEMBER 22 - 25, 2011










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Thursday, February 24, 2011

American Medical Association's "MorningRounds" newsletter

 
 

Researchers pinpoint protein abnormalities in CFS, Lyme disease patients' spinal fluid.

The CBS Evening News (2/23, story 7, 1:55, Couric) reported, "Chronic fatigue syndrome: Some believe that's a made-up condition." CBS (Miller) added, "For as many as four-million Americans afflicted with CFS, science offers tangible proof they have a disease. ... Researchers examined the spine fluid of CFS patients, healthy people, and patients afflicted with a similar disorder, Lyme Disease. They found over 700 proteins or indicators of disease unique to CFS patients alone."

According to the AP (2/24), the study in the journal PLoS analyzed spinal fluid from 25 "chronic Lyme patients, 43 people diagnosed with CFS and 11 healthy people." They detected "more than 2,500 proteins in each group"; and found "clear sets of proteins -- hundreds each -- unique to each disease." Lead researcher Dr. Steven Schutzer of the University of Medicine and Dentistry of New Jersey said the next step will be to "study more people to see if certain protein abnormalities" might serve as a diagnostic signature. Specialists called the study a "promising start" for clearing up confusion about the two illnesses. But "much more work is needed," cautioned Dr. Joseph Breen, a Lyme specialist at the National Institutes of Health, which "helped fund the work."

The Wall Street Journal (2/24, Marcus, subscription required) adds that Dr. John Aucott of Johns Hopkins School of Medicine, who was not involved with this study in PLoS, said the findings could ultimately lead to the development of more effective treatments for both illnesses. Dr. Aucott is the lead researcher for a study that will enroll 100 Lyme disease patients and seek to identify blood differences between people who have chronic Lyme disease and those who recover after treatment.

Source: AMA Member Communications [MorningRounds@ama.custombriefings.com], Feb 24, 2011

 

Check out CFS Central: GET FAUCI

5 Celebrities with Fibromyalgia | ThirdAge.com Slideshows

 

Wednesday, February 23, 2011

Spinal Fluid Test May Distinguish Chronic Fatigue Syndrome from Lyme

Research breaks stereotypes about Chronic Fatigue - CBS Evening News

 

CFS on CBS Evening News February 23, 2011

CFS on CBS Evening News        February 23, 2011
 
"We all get tired but is it Chronic Fatigue Syndrome?  Some believe it's a made up condition but Michelle Miller reports it's very real."
 
A disease often dismissed and misunderstood by doctors.  "Did he really tell you it's all in your head?" "He said all women are tired."
 
Dr. Steven Schutzer
 
research on CFS patients, healthies, Lyme patients found 738 proteins unique to CFS
 
Dr. Klimas can finally tell her patients that science has validated their symptoms.
 
My only quibble with the report is it was too short!  Probably under a minute.

Farewell and Good Luck « FibrOuch_ME/cfs BloG

 

HEY, LAZY ARSES! by Hillary Johnson

 
"Apparently, these shrinks are willing to take their chances with historians, who may well view them as the Nazi doctors of the early 21st century, in order to keep their pockets lined and their professional hegemony with the British National Health Service and Swiss Re intact."
 
* * *
As with everything else, "follow the money".  Unfortunately, when it comes to CFS, few journalists do.

UMDNJ researchers discover Chronic Fatigue Syndrome proteins in spinal fluid

Introducing The Journey

WEDNESDAY, FEBRUARY 23, 2011

ANNOUNCEMENT

Our quarterly newsletter QUEST has just been published and mailed to all those who subscribe.  However, we now have added a new section to QUEST entitled THE JOURNEY which deals with treatment, concerns and support issues.  In view of this, we are making this issue available to anyone who would like a copy. 

 

Please contact me and I will email you a copy as an attachment or provide me with your mailing address and I will send you a copy via the postal service free of charge.

 

Lydia
Lydia E.  Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518

NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA

SEPTEMBER 22 - 25, 2011








Tuesday, February 22, 2011

Mikovits January 2011 talk in Santa Rosa

 

PACE trial on CBS News Wednesday (tomorrow)

Katie Couric on the Pace Trial

by XMRV Global Action on Tuesday, February 22, 2011 at 6:52pm

Here is info from PR forum with permission to repost: 

 

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:

[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]


What's wrong with some "CFS" research

Sampling bias
Say you've got ME/CFS. You often have to decide whether to spend your tiny
allotment of energy on a shower or making yourself something to eat. One
day you hear about a study. If you become a subject, they'll require you to
exercise. If you exercise, you won't have enough energy for the shower OR
the food.
Do you participate?
Neither would I.
http://cinderbridge.blogspot.com/2011/02/why-i-became-mecfs-advocate.html?sp
ref=fb

Cinder Bridge: Why I became an ME/CFS advocate

 

Open Access Research Site

IN THE NEWS

 

OTTAWA Medical researchers from Ottawa and Britain want all their colleagues to tell the world what studies they're working on.  They indicated that the left lab doesn't know what the right lab is doing.  That applies to new drugs, how to vaccinate in a flu pandemic, research etc. "And so there is no place in the world where you can go and see who's doing what in the world and what's going on." States Dr. David Moher of the Ottawa Hospital Research Institute.  There is much duplication in systemic reviews and money wasted on duplications which could be spent on useful work somewhere else.  Dr. Moher and colleagues in Britain have set up a website where scientists can announce their studies in the earliest stages at no cost to prevent such waste.  An open access website is to start operating today (February 22, 2011)  at the University of York in England at http://www.crd.york.ac.uk/prospero.

Reporter, Tom Spears, Ottawa Citizen, February 22, 2011

 

Reed more at Read more: http://www.ottawacitizen.com/technology/Share+knowledge+health+researchers/4322259/story.html#ixzz1EguFEwCQ

 

 

Lydia
Lydia E.  Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518

NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA

SEPTEMBER 22 - 25, 2011





Monday, February 21, 2011

500 days

 
It has now been over 500 days since Lombardi et al was published in Science....