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WHAT IS ASSSEM?

We are a group of Spanish health


professionals: doctors, nurses, pharmacists
and biologists who have decided to join our
efforts to contribute to the change that was
started by researchers. We are interested
and knowldegeable in ME/CFS and have
started a new group called ASSSEM (Association of Health Workers
intersted in ME/CFS www.asssem.org ). This group is different
from the Liga SFC (our "sister" group www.ligasfc.org ), which is a
patient advocate group, although some of us are in both associations
as some of us in Liga SFC are also health professionals.

We now we also have the help and support of a world-renoun


immunologist specialized in ME/CFS and MCS, Dr Pablo Arnold, who
works out of Barcelona.

For now we are working on:

1. XMRV RESEARCH COLLABORATION

We are collaborating with IrsiCaixa (the


Spanish retrovirology lab that has found the
XMRV in ME/CFS patients and is working on
some amazing immune biomarkers for
ME/CFS) .We are looking for funds to make
up for their lack of financing caused by
them being denied a large grant from the Spanish Ministry of Health.
We are in continuous conversations with IrsiCAixa on the best ways to
help them.

2.POLITICAL WORK

Catalonia has just had elections and there has


been a change in goverment. One of the new
key people in the new team at the Department
of Health was, for 7 years, the health expert in
the Parliamentary opposition and he promised
(in front of the whole Parliament and we have it
on video) that "Catalan people with ME/CFS would never be alone
again". In our new conversations with the new Health Department
Adminstration, our ideas are clear: we want financing for the IrsiCaixa
research project and also we want a new way of seeing CFS/ME (from
the CBT and antidepressant medication approach they have had up to
now to a medical-scientific approach with proper testing and
treatment), and, especially to rethink the ME/CFS-FMS units which
are now useless "fibro-parkings".

3. LEGAL ACTION

We are taking the first steps towards, if necessary, to sue the Spanish
Health Ministry for the bad shape that patients with Central Sensitivity
Syndromes are in (ME/CFS, FMS and MCS) and the lack of proper
public health care services. We are just beginning this. For now, we
are starting with Catalonia and then we hope to reach all of Spain and
who knows, maybe some day the rest of Europe might want to join in
such type of action. The idea is that this legal action become a public
issue in the press and so it can be talked about, and also talk about
XMRV, etc.

4. TRAINING

Health workers are not trained about ME/CFS in Spain. They think that
ME/CFS is a psychological illness and they prescribe antidepressants,
tranquilizes or Lyrica. We, ASSSEM, have written a document (for now
it is only in Spanish, but we are working on the English version), with
very concrete information for the doctor to understand what is
ME/CFS, how to diagnose and the options that there are in treatment.
We are doing talks, courses and presentations for health workers.

5. RESEARCH

Besides doing weekly polls on our blog www.asssem.org to gather


information for future reference (regarding patient's views, economic
situation, health care service experiences, etc), information which will
be copiled eventually, we are working on an epidemiological study
through a questionnaire, a very broad based one, to gather important
information regarding ME/CFS and its associated pathologies, like
cancer. (The word "cancer" freightens people and if we manage to
find a corrolation between ME/CFS in the statistics with a higher
incidence of cancer, we will have taken an important step). Our idea
is to, on the basis of the results of the questionnaire, the rates of
cancer and the immunological state of the patients who respond, to
carry out an epidemiological study with the objective of publishing it
an to use it as evidence in a court of law.

6. Proper testing

We are in negotiations with a private lab in Spain


that might be able to develop, commercially and in
an economic manner, the determination of what
we think might be the first biomarkers for ME/CFS (high levels of CD5s
in CD8s and low levels of CD57 in NKs as determined by the IrsiCAixa
study) to be able to back up what has been published by IrsiCaixa
(they told us that they could not do this type of testing for the general
public). Of course, it would be better to look for XMRV, but this is
more expensive and only IrsiCaixa is able to do it. As you might know
already, the other Spanish research labs only do PCRs for
XMRV...which, of course, it is useless: you cannot find the XMRV with
a PCR.

7. Day to day support and information to health workers and patients


Through our web www.asssem.org , we keep Spanish ME/CFS
associations and health professionals informed of issues regarding
ME/CFS both nationally and internationally. We answer questions,
complaints or simply, listen to patients' stories and give them support
and encouragement.

The ASSSEM team.