ANNOUNCEMENT: SPINAL FLUID PROTEINS DISTINGUISH LYME FROM ME/CFS
by Lydia Neilson
SPINAL FLUID PROTEINS DISTINGUISH LYME DISEASE FROM ME/CFS
U.S.A. Dr. Steven E. Schutzer and his team of the University of Medicine and Dentistry of New Jersey have discovered unique proteins in the spinal fluid of ME/CFS and Lyme Disease people which suggest both conditions involve the central nervous system and that protein abnormalities in the CNS are causes and/or effects of both conditions. It was also able to distinguish those of healthy controls.
Dr. Schutzer stated that “Spinal fluid is like a liquid window to the brain” and he hoped that that the abnormalities could be used as markers for each condition and lead to improvements in diagnosis and treatment.
Short version:
http://www.pslgroup.com/news/content.nsf/medicalnews/852576140048867C8525...
Research write up:
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0017287
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
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 2 months
ANNOUNCEMENT: Message from MEAO on CBT, GET, PACE
by Lydia Neilson
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(a)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
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 2 months
ANNOUNCEMENT: SURVEY UPDATE & IMPORTANT NOTICE
by Lydia Neilson
> Survey Update
>
> Survey: We thank you for a strong response so far.
> The Survey can be found at http://www.surveymonkey.com/s/QZFJ8SR Deadline remains March 9th.
>
> A glitch when submitting has been reported by a few responders.
> In these cases, after submitting there was no clear confirmation of receipt; the survey and Submit Button remained visible. When Survey Monkey is working properly, the response is a thank-you and you will no longer be able to see the survey on that computer.
> We have confirmed that in these cases the survey has NOT been accepted to the database.
>
> If this describes your situation, the problem may go away on a different computer or network. But, if you still have energy for one more try, we recommend a lower tech work-around;
> - While unfilled survey is in the browser, under “Edit”; SELECT ALL ,
> - “Copy” & “Paste” entire survey into a Word (or alternate) document;
> - Find some way to indicate your choices - e.g. bolding correct answer and type text in appropriate spots. Don’t worry about appearance.
> - Save this file as “Patient Survey Workaround - ####” choose some random 4 digit code.
> - Attach and email to MEAO survey(a)meao.ca or National ME/FM Action Network. mefmaction(a)ncf.ca
>
> We’ll make sure these are entered into database. We’ll do our best to maintain confidentiality on the workaround. Same if you print the survey, fill in with pen and send by post.
>
> Note: We’re recommending you copy/paste/print unfilled surveys and mark them up. We can’t guarantee a method for all where the answers from Survey Monkey won’t get abandoned in the "Paste".
>
>
>
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
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 2 months
MESSAGE FROM LYDIA
by Lydia Neilson
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
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 2 months
ANNOUNCEMENT: IACFS/ME PRESIDENT ON PACE TRIAL
by Lydia Neilson
February 24, 2011
IACFS/ME Statement on the PACE Trial:
The Issue of Illness “Reversal”
The much publicized UK-based PACE trial (Lancet, Feb. 18th; http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2...) reported positive outcomes for patients with CFS/ME who were treated with cognitive-behavior therapy (CBT) or graded exercise therapy (GET) in comparison to a standard medical care condition or an adaptive pacing condition. The adaptive pacing condition was intended to help patients adjust their activity levels according to their available energy (based on envelope theory). The findings were similar to previous CBT and GET studies in CFS. This trial was unique in incorporating a pacing condition and recruiting a very large sample.
We certainly support any effective treatment for CFS/ME, medical or behavioral. Behavioral interventions are helpful for a number of major medical conditions (cardiovascular disease, diabetes).
Illness “Reversal” and Behavioral Intervention
The most fundamental concern we have is focused on the type of causal model that was linked to the CBT and GET conditions in this study. The model, based on the application of cognitive-behavioral and physical conditioning principles, predicts that properly designed behavioral or exercise interventions will “reverse” the CFS illness. Not improve symptoms/functioning or provide better management, but “reverse” the illness. This term implies that the illness can be cured (or something close to it) with behavioral techniques.
If one assumes such a direct correspondence between behavioral treatment and curative outcomes, then the illness is by implication a psychiatric condition. Once this assumption is made, then research efforts to assemble a biomedical model of CFS are more likely to be delegitimized. And the public’s perception of the illness as simply being tired is again reinforced. Perhaps this is the most unfortunate aspect of the PACE trial: The omission of any reference to the medical complexity of this illness.
Furthermore, when one compares the study goal of illness “reversal” to the reported outcomes, the support for such reversal is modest at best: 30% of GET and CBT patients achieved normative physical functioning-- but the 30% figure was in comparison to 15% who achieved such normative function in the standard medical care control condition.
Thus a more accurate statement of this finding would be: An additional15% of patients in the CBT and GET conditions achieved normal functioning in comparison to standard medical care. The critical standard of clinical significance is that a therapy results in restoration of normal function. But their own data do not support reversal outcomes above and beyond standard medical care for the vast majority of their subjects in the CBT and GET conditions.
Question of CFS/ME Diagnosis
In addition, the 15% advantage over standard care for patients in CBT and GET can be further questioned given that at least 1/3 of all patients did not meet the strict international criteria for CFS (Table 1 in study)—the diagnostic protocol most often used in published studies. Strict criteria for CFS are linked to poor prognosis and conversely, subjects who don’t meet strict criteria for CFS have better outcomes. So the PACE trial folded in a significant number of subjects who do not have CFS according to standard criteria. Again this dilutes the significance of their findings as it makes it more difficult to generalize to the population of people who do have CFS.
To put behavioral approaches in context—they can be quite helpful, but they hardly meet the standard of clinical significance that would elevate them to curative interventions. If this had been made clear in the study, it would have provoked far less controversy and debate.
Media Mis-reports
Finally, the media message from this study has often been: “Exercise is good; Rest is bad.” Although the PACE trial authors did not issue such a statement, I think there is some responsibility to explain to the media that this type of recommendation is simplistic and potentially harmful for patients with CFS/ME. Activity and exercise recommendations must be based on a thorough evaluation and a sensitive individualized approach, not the broad brush that has become the take home message of this study.
Fred Friedberg, PhD
President
IACFS/ME
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
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 2 months
ANNOUNCEMENT: INTRODUCING THE JOURNEY
by Lydia Neilson
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
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 2 months
ANNOUNCEMENT: OPEN ACCESS RESEARCH SITE
by Lydia Neilson
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
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 2 months
ANNOUNCEMENT: OPEN ACCESS RESEARCH SITE
by Lydia Neilson
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+researcher...
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
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 2 months
ANNOUNCEMENT: IMPORTANT SURVEY - DEADLINE WED, MAR 9/11
by Lydia Neilson
Dear Friends:
The Myalgic Encephalomyelitis Association of Ontario (MEAO) and the National ME/FM Action Network have collaborated on a survey questionnaire which is very easy to complete. The more people fill in the questionnaire, the more the data will be important and able to be used. This survey is open to everyone involved with ME/CFS, Fibromyalgia or Multiple Chemical Sensitivities (MCS) and the results will be available through MEAO. This survey will take you about 9 minutes to complete.
HERE IS THE LINK: http://www.surveymonkey.com/s/QZFJ8SR
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
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 2 months
ANNOUNCEMENT: NAMES WANTED
by Lydia Neilson
WANTED:
NAMES & ADDRESSES OF DOCTORS, NURSES AND HEALTH CARE PROFESSIONALS
Dear Friends:
We will shortly be sending out invitation to medical and healthcare professionals to the IACFS/ME clinical and research conference for ME/CFS, FM and related illnesses Translating Evidence into Parace that the National ME/FM Action Network is hosting in Ottawa in September 2011.
This is the opportunity to let us know who you would like us to invite to this event. Please submit the names and addresses of those individuals and we will add them to our list. You can send us the list by email, fax, or through regular mail.
Please do this as soon as you can.
Thanks so much.
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
Email: mefmaction(a)ncf.ca
www.mefmaction.net
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
13 years, 3 months