URGENT ! SpanishCFS Liga needs our help , please sign petition !!!!

[aruschima]

I think the petition is not active anymore, because the The Health Ministry has already denied the petition for funding research into XMRV. But sign anyway and please support the Spanish CFS Liga in any way you can. See second post below.

Three reasons to sign the petition

1) COULD BE INFECTED AND IS ASSOCIATED WITH CANCER AND SFC.

2) IF YOU NEED A TRANSFUSION OR TOMORROW TRANSPLANTATION IN SPAIN WITH YOU MAY INFECT XMRV.

3) IS SOLIDARITY WITH CANCER PATIENTS AND CARRIERS ARE SFC XMRV

You can sign the petition here:

http://actuable.es/peticiones/pedimos-al-gobierno-financiar-estudios-el-nuevo-retrovirus

I don't know if this petition is actually still on, or they merged it with the following :

Scroll to the end of the page for signing

http://www.petitionbuzz.com/petitions/xmrv

1. Awarding public research budget of the new human retrovirus XMRV and its variants to the foundation that is Irsi Caixa has developed beyond its pilot study has found XMRV retrovirus sequences in CFS patients and healthy controls, and detected immune dysfunction of CD8 reflected in the patients with CFS.

2. Make available to the citizens of a validated blood test and free for those affected by diseases associated so far this retrovirus: prostate cancer, breast cancer, leukemia, lymphoma, myelodysplastic, thymomas and noncancerous conditions, such as chronic fatigue syndrome, and other neuroimmune disorders such as autism and fibromyalgia.

3. Blood Banks Protect Spanish of this retrovirus as the FDA could carry 7% of the population. There are security tools that eliminate all pathogens such as Cerus Corporation that is not built in Spain. Additionally, a ban should be lifted to patients diagnosed with CFS for donated blood and organs.

4. Creating a Unit of Chronic Fatigue Syndrome, Fibromyalgia, Multiple Chemical Sensitivities and other diseases neuroimmunologic Hospital Carlos III of Madrid, Department of Infectious Diseases and AIDS who runs Vicente Soriano. Parallel with another unit should be created in Barcelona Caixa Irsi hand. Both units could serve as a model for other units to be set up throughout the country, as the HIV experience in both Ventura Clotet Vicente Soriano could be moved to XMRV.

5. Hospital Carlos III has already published his study, where they have not succeeded in detecting the XMRV in any patient with CFS, so it should work with the Caixa Irsi team led by Dr. Ventura Clotet, since they seem to go ahead with the investigation have already been published in Virology 3 studies that have detected the XMRV in CFS patients in Spain.

6. Implementation of clinical trials with the sickest patients that can help define future treatments.

(Reference seconded by the patient association and Asquifyde LigaSFC)

Please an answer

Sincerely,

LigaSFC
Asquifyde
Fibroamigosunidos


If you additionally want to donate to the study, any donation (even a euro) is welcome:

CTA No: 2100 0325 05 41 02001422
Concept: SFC XMRV STUDY
Beneficiary: Foundation IrsiCaixa
Address: Carretera de Canyet s / n 08916 Badalona (Barcelona)
Contact: Lourdes Grau lgrau@irsicaixa.es
http://actuable.es/peticiones/pedimos-al-gobierno-financiar-estudios-el-nuevo-retrovirus

 

[aruschima]

URGENT! The Health Ministry denies funding for research XMRV

URGENT! The Health Ministry denies funding for research XMRV
Published on January 13, 2011 by edu
THE HEALTH MINISTRY DENIES FUNDS TO CONTINUE THE INVESTIGATION XMRV IN CHRONIC FATIGUE SYNDROME, WHAT CAN YOU DO?
January 12, 2011

The Ministry of Health has denied the Hospital Can Ruti researchers (in collaboration with Dr Clotet), who were investigating the role of retroviruses XMRV in Chronic Fatigue Syndrome (CFS), funds to continue their research. This team (Laboratory IrsiCaixa) is the only one in Spain has found XMRV in CFS and one of the few in the world that has begun to identify the immunological disorder exist in CFS. This team's findings had global significance on the retrovirus HIV (AIDS) and their effects on the immune system of people with HIV. Now they were making an important and necessary work on the SFC. But his funds are gone and the Ministry of Health does not want to give priority to this disease that affects 3 million Spanish people (women, children and men). Other research being done in Spain on the SFC, apart from Can Ruti, are from very little use (the use of NADH in CFS) to insulting (studies on the personality of people with CFS).

We can not allow the Ministry to sabotage this important research!
WHAT CAN YOU DO?

1. Leire Pajin WRITE
Write to the Minister of Health, Social Policy and Equality, Leire Pajin, saying that research in CFS XMRV IrsiCaixa Laboratory is a priority, that the lives of millions of Spanish depend on such research and to reconsider their refusal to give them funds.
You can send an email to:
oiac@mspsi.es
Or write by post to:
Minister Leire Pajin
Ministry of Health, Social Affairs and Equal
Paseo del Prado, 18-20, ground floor, corner of Lope de Vega. 28014 Madrid.

2. WRITE TO THE NEW TEAM OF SALUT CATALAN DEPARTAMIENT
On May 21, 2008, in Resolution 203/VIII vote in the Parliament of Catalunya on services to Chronic Fatigue Syndrome and Fibromyalgia (FM), resolution was voted unanimously, the CiU deputy, Francesc Serena Sancho said, people with CFS and FM to understand their reality, which is committed to his cause, adding: "Never again be alone."
Dr Sancho Now Serena is the new Secretary for Strategy and Communication in the Health Department of the Generalitat de Catalunya.Escrbele to tell him that you're worried @ the Ministry has denied funds Can Ruti laboratory for further investigation needed on XMRV in CFS and that they will close this avenue of research for lack of funds. Tell him you know about his personal and political commitment to these new diseases and we need a financial commitment for the 250,000 people in Catalunya sick with CFS and FM may have some future prospects.
Your email is francescsanchoserena@hotmail.com

3 - WRITE TO EQUIPMENT CAN RUTI
Write Can Ruti team to thank the research work have been carried out on the SFC for the past year, research has given us important information on the immunological derangements in CFS. Sorry to tell you that they have not received a grant from the Ministry had expected and we hope to continue seeking funds we need, desperately, to continue working on the SFC, that we can leave now and no other serious virologists in Spain who may do the job they do. In Spain, they are our only hope.

You can write to:
Dr Clotet Bonventura
Dr Julian White
Dr Cecilia Cabrera
http://www.irsicaixa.es/contacta

4. DONATIONS WANTED
Find friends, contacts, associations, etc., grants for study in CFS XMRV Can Ruti:
CTA No: 2100 0325 05 41 02001422
Concept: SFC XMRV STUDY
Beneficiary: Foundation IrsiCaixa
Address: Carretera de Canyet s / n 08916 Badalona (Barcelona)
Contact: Lourdes Grau lgrau@irsicaixa.es

5. CIRCULATE THIS NEWS TO ANYONE WITH SOCIAL AWARENESS:
- SFC partnerships, FM and MCS
- Other patient associations
- Health professional groups
- Groups interested in public health
- Human rights groups
- Groups that are trying to improve our society
- Political parties
- Deputies
- People fighting
- Etc.

THANKS,
SFC League
www.ligasfc.org

 

[aruschima]

I am very disappointed by the lack of response here !

 

[justinreilly]

I signed. Thanks for your work in making our voices heard to the Spanish Govt.

 

[glenp]

I signed - I guessed at the language

 

[aruschima]

Thanks GlenP and Justin.

 

[Rita]

I donated two times last year in this count.
Now we are in a big economical crisis in Spain,and is difficult to obtain funds for research, from government or from other people.
This research is the most serious made in Europe, I think, in close contact with WPI.
I hope they dont stop the research because financial reasons.We need their work and it will be interesting and necessary for all the CFS people in Europe.Years are passing and we need treaments .

 

[aruschima]

Rita,
Yes, you are so right ! This research is the most serious in Europe and it is important globally !

It is independent research , confirming the research done by the WPI, and they are in contact with the WPI. They want take the next step to study the pathology of XMRV and related viruses. The research is done at the AIDS Research Institute IrsiCaixa, in collaboration with Dr.Bonaventura Clotet !

Dr. Bonaventura Clotet, director of IrsiCaixa, winner of the ICS Research Trajectory award
05/11/2010
The award recognizes Clotet’s contribution to the fight against aids from all sides, both for his involvement in the search for a cure and the improvement of the quality of life of patients.
The Catalan Institute of Health (ICS) has awarded the work conducted by Dr. Bonaventura Clotet in the fight against aids with the Research Trajectory Award, which was delivered over the course of the ICS’s 3rd Research Conference.
Dr. Bonaventura Clotet, director of the IrsiCaixa Institute for Aids Research, has been awarded for his fight against aids from all sides, both for his involvement in the search for a cure and the improvement of the quality of life of patients.

This award is granted by the ICS to recognize the career trajectory of professionals who have contributed significantly to the development of health sciences research in the field of hospital-based and primary care and who conduct activity of renowned scientific level. The objective of these awards is to promote and recognize the high quality health sciences research performed by these researchers.

In addition to Dr. Bonaventura Clotet, this year the award has also been granted to Angel Villa, for his research in the prevalence of chronic disorders and the development of quality indexes that are now used throughout the entire ICS.

MR. BONAVENTURA CLOTET SALA
Director of the Center for AIDS Research, IrsiCaixa

A Doctor of Medicine, Bonaventura Clotet Sala is the Head of the HIV Unit and Director of the Retrovirology Laboratory of the IrsiCaixa Foundation at the Germans Trias i Pujol University Hospital in Badalona (Barcelona province). Since February 2007 he has also been the Co-Director of the Catalan Center for the Research and Development of HIV Vaccinations. Dr. Clotet belongs to the Drug Resistance Mutations Group of the International AIDS Society (IAS-USA) and is also a member of the International AIDS Society’s Governing Council. He belongs to various organizing committees of congresses on resistances and of international conferences on AIDS, and he is an active member of a number of expert committees for the appraisal of research projects in the National Health and AIDS Programs. Bonaventura Clotet Sala has published over 350 articles in international journals.

Bonaventura Clotet, M.D., Ph.D.

Dr. Clotet, who provided coverage of the 4th European HIV Drug Resistance Workshop, is chief of the Internal Medicine HIV Unit at the University Hospital Germans Trias i Pujol in Barcelona, Spain. Since 1994, he has also served as the director of the Retrovirology Laboratory at the "irsiCaixa Foundation," a leading institute for the research and treatment of HIV in Europe.
A prolific writer, Dr. Clotet has authored and co-authored more than 200 articles, which have appeared in international peer-reviewed scientific publications focused on infectious diseases and HIV, and more than 20 medical books. Since 1998 he has also been a reviewer of submitted papers for the following journals: AIDS, AIDS Research and Human Retroviruses, The Journal of Infectious Diseases, Clinical Infectious Diseases and The Lancet. He currently serves on the editorial board of the Journal of the International Association of Physicians in AIDS Care, AIDS and Current HIV/AIDS Reports.
Apart from his clinical work at the University Hospital Germans Trias i Pujol, Dr. Clotet is involved in many professional societies, such as EuroSIDA, the European AIDS Clinical Society, and the International AIDS Society-USA. He is part of the organizing committees for several drug resistance workshops and the International AIDS Conference, and he is an active member of the expert commission for the evaluation of research projects in the National Programme of Health and National AIDS Programme.
Advertisement
Dr. Clotet received his medical degree in 1976 from the Universitat Autnoma de Barcelona and completed his post-graduate training in internal medicine and infectious diseases at the Vall d'Hebron University Hospital. He went on to earn his Ph.D. in the investigation of surrogate markers for connective tissue diseases.
Dr. Clotet has received research funding from the following concerns: BECA FISss, Commission of the European Communities Biomedical and Health Research (BIOMED II), FISss, Fundacion Glaxo Wellcome, Fundacion para la investigacion y la prevencion del SIDA en Espana, Maraton de TV3, Ministeri d'Educacio i Cultura, Ministerio de Sanidad y Consumo, Plan Nacional de I+D and Proyectos I+D. He has also served as a consultant for Abbott Laboratories, Boehringer-Ingelheim, Bristol-Myers Squibb, Gilead Sciences, GlaxoSmithKline and Roche Labs.
.

 

[Merry]

I signed, but, because I don't know Spanish, I spent a couple of minutes pondering and clicking. Finally I scrolled to the bottom of the page and found the "sign petition" bar, in English.

 

[eric_s]

I just made a donation to that account. Not much, only 15 Euros, but i can't afford more at the moment. If many people donate, even if it's such a small amount, it can have a big impact.

I think it would be good to have some additional information, so it's easier to donate, and people know better what happens with the money they give.

It would be good to have an IBAN and BIC, for people outside of Spain. There are calculators on the internet, but i think it would be better if IrsiCaixa or the Liga SFC could provide them, so we are sure they are correct.

And what would be good to know...
What is the status of IrsiCaixa's XMRV research at the moment? Are they working right now and if so, on what?
Or do they wait for more donations until they can do more?
Does all the money donated with the message "Estudio XMRV SFC" go to that research only, so that it can't be used for other, non XMRV related things?
What will happen with the money that has been donated and is left over, once the study is finished?

I have asked them about these things in an email just now and will post the information they give me.

I think the more that people know, the more they can be convinced to donate.

This seems to be the best work being done in Europe at the moment and IrsiCaixa looks like a perfect place to do that kind of research, check out their website. http://www.irsicaixa.org/en
They have a lot of experience with retroviruses.
So, especially if you are in Europe, please donate, there are no or only very low bank fees for a transfer within Europe.

 

[maryb]

arushima - i think sometimes its hard for people with ME to write letters. me in particular, I'm great though at petitions and e-mails, but if I have to write as soon as I have to think my mind goes numb, what I'm saying is for those who are in touch with the organizers, I would suggest any form of e-mail campaign would get more support IMO. Supplying people with templates and all the e-mail adresses really does make a difference.

 

[aruschima]

Eric, great job writing to them and asking for more information !

Maryb,

I would love to do more, but I do not speak Spanish, understand only what I get from the google translation and ASSSEM blog. This limits my ability to get really active.

If people are interested to form a Online Europe (Global) Action Group, please do pm me !

We should have as many different language speaking people as possible.

Any Spanish, Italian, Norwegian, Swedish, Dutch, French out there ? Who would be willing to help with translations? (And possible creation of campaigns ?)

Please PM me.

There is more information on the ASSSEM page, but sadly also only in Spanish; google translation is really crap.

From what I gather, the focus is now on A marker for CFS, "high in CD8 CD5 and CD57 on NK low" for example validation of disease and on pathology. They are going strait to the point !

What is so great about ASSSEM : it is a group of patient and professionals in the field of medicine.
For the first time doctors/ researchers are doing the campaigning them self ! In Europe, up to this date, unheard of.

Great stuff !

http://www.scribd.com/doc/47029038/ASSSEM-Presentacion-en-PP

http://www.asssem.org/