Archive for November, 2012

Another thank you to caregivers everywhere!

As November ends, we must give another shout-out to caregivers everywhere for all you do!

Thank you for helping.

Thank you for caring.

Thank you!

We appreciate you!

 

 

Anyone, anywhere can help.

Please vote in the Citgo Fueling Good Program.
Also spread the word.
Anyone in the world can vote.
Vote each day through November 28th.

 

You may vote for each organization once per day (per email address).

CFS Solutions of West MI:

http://www.fuelinggood.com/rewardinggood?id=1331606

ME/CFSKnowledgeCenter:

http://www.fuelinggood.com/rewardinggood?id=1292947

Help these organizations win money to help people with ME/CFS!

Thank you!

and now, sending good thoughts to patients in Norway – updated

A grant application (amount 9 million Norwegian kroner which is $1,554,381US as of 17 Nov. 2012) has been made in Norway to study “The Lightning Process” and ME.

A little bit about “The Lightning Process” created by Phil Parker:

It is claimed that “The Lightning Process” can cure MS, fibromyalgia, depression and ME (or ME/CFS) among many other diseases. It is also claimed, that on the “The Lightning Process” 3-day course, patients with dairy, gluten and/or sugar intolerances have gotten over these – in one day.

There is quite a bit of secrecy surrounding “The Lightning Process” (http://www.lightningprocess.com/Lightning-Process-2/). Before attending, participants sign a form acknowledging that they will not disseminate information received during the course.

Participants are told that success hinges on devoting themselves wholeheartedly to mastering the process.

This 3-month followup is not dated so, there is no way to know if the proposed 6 and 12 month followups have taken place, and if so, what the data indicates. http://www.lightningprocess.com/data/uploads/Outcome%20Measures%20Study%20interim%20report%20Sep%2011.pdf

Given the variability of MS and ME/CFS symptoms, it is possible participants – whose diagnoses were self-reported – were already on an upswing…. One might also wonder if the high cost of the course (about 620 pounds – in 2010 or about $984.68 US dollars) might influence patient’s responses about how well (or not) their money had been spent.

It is also clear that not enough is published about the numbers of people who did not improve (or worsened) as a result of “The Lightning Process”.

There are many criticisms (and some support) of “The Lightning Process”, but our concern at present, is the possible Norwegian study.

Few study details are available.

Those applying for the grant say there will be 200 patients in the study – 100 undergoing “The Lightning Process” and the other 100 receiving (as yet unspecified) treatment at hospitals, patients will be followed for two years, and will be interviewed repeatedly during and after the study.

There is uncertainty about whether this study can use Lightning Process (LP) coaches because LP coaches are required to pay a per-patient-royalty.

It seems that the royalty requirement was not made apparent to those applying for the study money.

This raises additional questions about the study – especially since a well-known Norwegian Lightning Process provider is an adviser for the study.

The applicants say that even if they don’t use Lightning Process coaches, they will use the same treatment methods, though one would assume that the secrecy surrounding those methods may limit the openness of the research, methodology, discussion, etc.

Amid claims that such a study does not mean that ME is a psychosomatic disorder, the Principal Investigator of the Norwegian Institute of Public Health, Per Magnus, was asked –

– Is it normal that the Institute will invest so much in researching a method as an alternative touch as Lightning Process?
– No, I do not think it’s normal. I can not remember anything similar …, says Magnus.” (Google translate)

http://mariasmetode.no/wp-content/uploads/2012/11/LP-Dag-og-Tid-side-1-1.pdf      http://mariasmetode.no/wp-content/uploads/2012/11/11.pdf

Certainly, nine million Norwegian kroner, or $1,554,381.00US, or 1,221,325.34 Euros, would be hugely beneficial for biomedical studies for ME/CFS as opposed to another study that puts the onus for getting better on the patient.

We hope that the Norwegian Directorate of Health has not forgotten that in October 2011 they said:

“Jeg tror at vi, i for liten grad, har klart å møte menneskene som har kronisk utmattelsessyndrom på en god nok måte. Jeg tror at det er riktig å si at vi ikke har utviklet en god nok helsetjeneste for disse, og det beklager jeg.”

Bjørn Guldvog, the Deputy Director General of the Norwegian Directorate of Health

English translation:

“I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that.”

http://www.euro-me.org/news-Q42011-003.htm

We hope the Norwegian Directorate of Health remembers that PROPER health care services must readily available for people with ME/CFS.

The following Google translations, into English, are articles about the proposed study and some key players.

http://translate.googleusercontent.com/translate_c?depth=1&ei=6fmnULa9O7DG0AH75YCgAw&hl=en&prev=/search%3Fq%3Dj%25C3%25B8rgen%2Bjelstad%2Bblogg%26hl%3Den%26tbo%3Dd%26biw%3D1680%26bih%3D878&rurl=translate.google.com&sl=no&u=http://dagogtid.no/nyhet.cfm%3Fnyhetid%3D2412&usg=ALkJrhjLOlvC0lrXGKdrhRTfaaxsu2Gu9A

http://translate.googleusercontent.com/translate_c?depth=1&ei=6fmnULa9O7DG0AH75YCgAw&hl=en&prev=/search%3Fq%3Dj%25C3%25B8rgen%2Bjelstad%2Bblogg%26hl%3Den%26tbo%3Dd%26biw%3D1680%26bih%3D878&rurl=translate.google.com&sl=no&u=http://www.dagogtid.no/nyhet.cfm%3Fnyhetid%3D2400&usg=ALkJrhgA57RU-MCSB-1Nywl6wRLDdTI-4Q

http://translate.googleusercontent.com/translate_c?depth=1&ei=6fmnULa9O7DG0AH75YCgAw&hl=en&prev=/search%3Fq%3Dj%25C3%25B8rgen%2Bjelstad%2Bblogg%26hl%3Den%26tbo%3Dd%26biw%3D1680%26bih%3D878&rurl=translate.google.com&sl=no&u=http://www.dagogtid.no/nyhet.cfm%3Fnyhetid%3D2413&usg=ALkJrhhoiyJI6SjqdHKQyI2xCpLtUkqEWw

 

Update These articles (Google translation) were posted on Co-Cure.

In the first, the Norwegian College of General Practice describes why they do not feel they can recommend the use of the ICC. The second article is the response by the Norwegian ME Association.

http://translate.google.com/translate?hl=en&sl=no&tl=en&u=http%3A%2F%2Fme-foreningen.com%2Fmeforeningen%2F%3Fp%3D4450

 

http://translate.googleusercontent.com/translate_c?depth=1&hl=en&rurl=translate.google.com&sl=no&tl=en&u=http://legeforeningen.no/Fagmed/Norsk-forening-for-allmennmedisin/Horingsuttalelser/Horing–utkast-til-rundskriv-om-CFSME-/&usg=ALkJrhi4EqX4znxSZNn2UJWna3BCm1LIng

 

Sending good thoughts to the ME Association of Denmark

The Danish ME Association http://www.me-foreningen.dk/ posted a question and answer session http://www.me-foreningen.dk/images/stories/me-cfs/pdf/sprgsml-svar%20om%20me-center.pdf about the ME/CFS knowledge center for Denmark.

Note – The FFL (the Research Clinic for Functional Disorders) is using NICE criteria and working with Peter White. However, as noted below, the ME Association of Denmark is continuing to dialogue with the Head-Neuro-Center, Aarhus University Hospital. We hope that their talks with them yield positive results for patients.

Thank you Helle for permission to repost. Please keep us up to date on the talks with the FFL.

lørdag den 27. oktober 2012 Questions and answers about ME/CFS knowledge center in Denmark

This is my best (that means far from perfect) translation of my previous post:
In the context of the establishment of a ME/CFS knowledge center in the Central Denmark Region, the ME Association (abbreviated: ME) asked a series of questions to the Head-Neuro-Center, Aarhus University Hospital, where the Research Clinic for Functional Disorders (abbreviated: FFL) is located. Below are the ME Association’s questions and the corresponding answers from FFL presented. There has subsequently been a meeting between the FFL and the ME Association, so the dialogue continues and more information is pending.

But so far, here are questions and answers:

ME: How is the knowledge center placed in the organization?  By this is meant, is it an independent unit under the Head-Neuro-Center, or is the knowledge center located under the Research Clinic for Functional Disorders?

FFL: The knowledge center for ME/CFS is located under the Research Clinic for Functional Disorders, which is part of the Head-Neuro-Center, Aarhus University Hospital.

ME: May we ask for a project description with objectives and budget for the knowledge center?

FFL: The Danish Health and Medicines Authority has asked the Central Denmark Region to establish a ME/CFS knowledge center. This unit is currently under construction, and we are in the process of finding the best way to solve the task and respond to the needs of the patients. As the function is a general part of the Research Clinic for Functional Disorders, there is no actual project description. Regarding the economic frame, Aarhus University Hospital has allocated 1,3 to 1,5 million annually for the operation of the knowledge center.

ME: Chronic Fatigue Syndrome Advisory Committee[1] has recommended that the use of the ME/CFS guidelines[2] (called “The Primer”) become widely used. Is the knowledge center also going to recommend and the use these guidelines?

FFL: So far, we will lean towards the British NICE criteria for ME/CFS.

ME: What treatments will the knowledge center use for ME?

FFL: There will primarily be used types of treatment, where there is scientific evidence for the effect for patients with ME/CFS. At present, these are cognitive therapy and graded rehabilitation. But we will keep a close eye on the research carried out both nationally and internationally, and naturally we hope for new and better treatments for this severely affected patient group. We hope that we also will get the opportunity to test new treatments in clinical trials, but there is not currently embedded economy for research. In addition we are in the process of building a wide network of collaborators from various medical specialties, including neurologists, infection, physicians, endocrinologists and rheumatologists. We are also working to be able to draw upon a rehabilitation unit, as there may be a need for hospitalization and rehabilitation of the worst patients, which in some cases are bedridden and need a much more intensive help than that offered in outpatient settings. Finally, we are in the process of exploring the possibilities of working with one of the diagnostic centers, some hospitals want to establish. We hope through these initiatives and the broad range of expertise that is available, to provide patients with ME/CFS better treatment in the future.


ME: Has the knowledge center plans to participate in the testing of Rituximab for ME?

FFL: The study, which has been trying to treat patients with ME/CFS with Rituximab is interesting. We have no current plans to investigate the effect of Rituximab, since it is a treatment with very high risk and there is still only very sparse documentation of the treatment. We know that there are studies underway elsewhere and will await these results before we take further initiatives in this area.


ME: Has the knowledge center plans to cooperate and gain knowledge from other ME centers, such as Chronic Fatigue Center[3], Open Medicine Institute[4], the PHANU group[5], Whittemore Peterson Institute[6] or ME/CFS senteret[7].


FFL: We have a wide cooperation both nationally and internationally. We do not at this stage have a collaboration with the centers, that you mention, but within the area of CFS, we work, amongst others, together with Peter White (Professor of Psychological Medicine, Centre for Psychiatry, Wolfson Institute of Preventive Medicine, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, St Bartholomew’s Hospital, London).


ME: Will the knowledge center seek participation in the international working group “Clinical Autoimmunity Working Group”[8], which is working to clarify whether ME is an autoimmune disease?

FFL: There is not currently a formal collaboration with the Working Group “Clinical Autoimmunity Working Group”. But we are at an early stage in the building of the knowledge center, we can not reject any possible future cooperation with anyone.

ME: May the ME Association get a representative to the meetings taking place about the establishment and operation of the knowledge center?

FFL: The knowledge centre for ME/CFS is part of the Research Clinic for Functional Disorders,’ daily operations and work. There is no independent board of directors or advisory group, and there are therefore not independent meetings where it would be appropriate for a representative from the ME Association to participate.


[1] Chronic Fatigue Syndrome Advisory Committee http://www.hhs.gov/advcomcfs/meetings/index.html  At the end of the meeting minutes http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac20120514.pdf  (page 51-55) from 14th of June CFSAC has written their recommendations.  ”CFSAC recommends that the HHS Secretary authorize the appropriate person within HHS to work with IACFS/ME to make the primer widely available, particularly to primary care providers.”

[2] Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, A Primer for Clinical Practitioners

http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf

[3] Chronic Fatigue Center by Nancy Klimas  http://www.cfsclinic.com/

[4] Open Medicine Institute ved Andreas Kogelnik http://www.openmedicineinstitute.org/Welcome.html

[5] PHANU (Population Health and Neuroimmunology Unit) at the Bond University in Australia.

http://www.bond.edu.au/about-bond/news-and-events/news/BD3_019855

http://phoenixrising.me/archives/13243

[6] Whittemore Peterson Institute

http://www.wpinstitute.org/

[7] ME/CFS senteret at the University of Oslo by Barbara Baumgarten-Austrheim  http://www.oslo-universitetssykehus.no/omoss/avdelinger/mecfs-senteret/Sider/enhet.aspx

[8] Clinical Autoimmunity Working Group   To raise awareness of ME, and promote collaboration, innovation and foundations for a clearer strategy of biomedical research into ME, Invest in ME has joined with the Alison Hunter Memorial Foundation of Australia – in cooperation with Bond University and University of East Anglia – to establish a Clinical Autoimmunity Working Group  http://www.investinme.org/IIME%20Statement%202012-05-31.htm

http://followmeindenmark.blogspot.dk/2012/10/questions-and-answers-about-mecfs.html

Caregivers everywhere – THANK YOU!

People with ME/CFS endure hurdles every day.

Some people with ME/CFS have caregivers who help make their lives a little bit easier. (We wish everyone with ME/CS had caregivers.)

Caregivers are unsung heroes. Thank you to each and every one of you!

We urge everyone to set aside political views for a while as you read excerpts of this U.S. Presidential Proclamation.

Presidential Proclamation — National Family Caregivers Month, 2012

NATIONAL FAMILY CAREGIVERS MONTH, 2012

– – – – – – –

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION

Our Nation’s health care professionals provide essential medical services to millions of Americans, yet they do not shoulder their responsibilities alone. Family members, friends, and neighbors devote countless hours to providing care to their relatives or loved ones. During National Family Caregivers Month, we recognize and thank the humble heroes who do so much to keep our families and communities strong.

Across America, daughters and sons balance the work of caring for aging parents with the demands of their careers and raising their own children. Spouses and partners become caregivers to the ones they love even as they navigate their own health challenges. Mothers and fathers resume care for children returning home as wounded warriors. Friends and relatives form networks to support loved ones with disabilities. All of them give selflessly to bring comfort, social engagement, and stability to those they love.

.

National Family Caregivers Month is a time to reflect on the compassion and dedication that family caregivers embody every day. As we offer our appreciation and admiration for their difficult work, let us also extend our own offers of support to them and their loved ones.

..”

you can read the full proclamation here: http://www.whitehouse.gov/the-press-office/2012/11/01/presidential-proclamation-national-family-caregivers-month-2012

Thank you caregivers (of every sort – family, friends, etc.)!

 

Advocacy webinar by the FDA

 

The FDA is hosting a webinar on November 15th. Sign up details are below. (Note, registration is limited to 250 people and FDA will not be answering questions about treatment options or development of treatment therapies.)

 

“Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change

The Office of Special Health Issues will be hosting a 1 hour webinar that will discuss Patient Advocacy.

The discussion will include presentations from other patient representatives and patient organizations on how they effectively worked with the FDA and other entities.

There will be an opportunity for those of you who live and struggle with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome to ask questions about patient advocacy and how to effectively work with government agencies and drug developers.

Unfortunately we will not be able to answer specific questions about treatment options or development of new therapies for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.

Registration is limited to the first 250 registrants

When
November 15, 2012 2:00 PM  –  3:00 PM
Eastern Time Zone

View Event Summary

RSVP
November 15, 2012″

Sign up using the link below:

 http://www.cvent.com/events/myalgic-encephalomyelitis-and-chronic-fatigue-syndrome-webinar-working-together-for-change/invitation-d6bfadbec016462f9fef1168273ec3d1.aspx