Hola Cathy,

No creo que nadie piense que es culpa del mensajero. Este tipo de
declaraciones es lo que nos encontramos todos los días en el mundo
real cuando consultamos a los médicos y está bien que nos lo
recuerden. No veo inconveniente en ponerlo aquí, así nos das la
oportunidad de comentarlo.

Copio aquí un mensaje publicado recientemente en Eurolyme y que
viene a colación de los comentarios de Ho-Yen ya que trata
sobre la información para enfermos en los foros de Internet:

> http://medicine.plosjournals.org/perlserv/?request=get-
document&doi=10%2E1371%2Fjournal%2Epmed%2E0020206
>
> PLoS Medicine
>
> Volume 2 | Issue 8 | AUGUST 2005
>
> What I've Learned from E-Patients
>
> Dan Hoch*, Tom Ferguson
>
> Dan Hoch is an assistant professor of Neurology at Harvard Medical
> School, Boston, Massachusetts, United States of America. Tom
Ferguson is
> a senior research fellow at the Pew Internet and American Life
Project,
> Austin, Texas, United States of America.
>
> Competing Interests: DH is a secretary for and TF is a director of
the
> nonprofit organization BrainTalk Communities.
>
> Published: August 9, 2005
>
> DOI: 10.1371/journal.pmed.0020206
>
> Copyright: © 2005 Hoch and Ferguson. This is an open-access
article
> distributed under the terms of the Creative Commons Attribution
License,
> which permits unrestricted use, distribution, and reproduction in
any
> medium, provided the original work is properly cited.
>
> Citation: Hoch D, Ferguson T (2005) What I've Learned from E-
Patients.
> PLoS Med 2(8): e206
>
> *To whom correspondence should be addressed. E-mail:
dhoch@...
>
> As a neurologist subspecializing in epilepsy at a respected
academic
> institution, I (DH) assumed that I knew everything I needed to
know
> about epilepsy and patients with epilepsy. I was wrong.
>
> In September of 1994, John Lester, my colleague in the Department
of
> Neurology at Massachusetts General Hospital, showed me an online
> bulletin board for neurology patients that he had created [1]. In
> reading through the online messages, I observed hundreds of
patients
> with neurological diseases sharing their experiences and
discussing
> their problems with one another.
>
> I knew that many patients with chronic diseases had been making
use of
> online medical information [2]. Nonetheless, I was shocked,
fascinated,
> and more than a bit confused by what I saw.
>
> I'd been trained in the old medical school style: my instructors
had
> insisted that patients could not be trusted to understand or
manage
> complex medical matters. Thinking back through my years of
training and
> practice, I realized that there had always been an unspoken
prohibition
> against groups of patients getting together.
>
> I had the uncomfortable sense that by promoting interactions
between
> patients and de-emphasizing the central role of the physician, I
might
> be violating some deep taboo.
>
> Remarkably Complex Stories
>
> My initial doubts notwithstanding, I found dozens of well-
informed,
> medically competent patients sharing information on a variety of
topics.
> I was especially struck by the many stories recounting the
development
> of a particular patient's illness, the patient's efforts to manage
it,
> and the resulting interactions with health professionals.
>
> By telling their stories in such elaborate detail, experienced
group
> members could offer a great deal of useful advice and guidance to
those
> newly diagnosed, based on what they had learned in their own
online
> research, what they had been told by their clinicians, and what
they had
> deduced from personal experiences with the disease.
>
> These "patient stories" often included a number of empowering
elements
> that set them apart from the advice patients typically receive
from
> their clinicians: role modeling by an active, critical, well-
informed
> "expert patient" ([1]; http://patientweb.net), comparative reviews
and
> recommendations of clinicians and treatment facilities [2–5], and
advice
> about how to handle the practical details of living with a chronic
> illness [6] (such as how to organize a home medical record, manage
> treatment side effects, find the best drug prices, and deal with
> less-than-perfect health professionals and health-care provider
systems,
> and a wide variety of other topics relating to effective medical
> self-management).
>
> These extended patient narratives—no two alike—thus gave rise to
an
> accumulated body of what my colleagues and I began to think of as
an
> expert patient knowledge base. We concluded that these patient
> narratives could be invaluable resources for clinicians and
researchers,
> interested in taking an in-depth look at the changing roles of
patients
> and clinicians in the Internet age.
>
> Figure 1. Logo of the BrainTalk Communities—Online Patient Support
> Groups for Neurology
>
> The constant outpouring of sympathy and support that we observed
in
> interactions among community members surpassed anything a patient
might
> conceivably expect to receive at a doctor's office. As Richard
> Rockefeller, President of the Health Commons Institute, has
suggested,
> disease-specific online patient networks provide their members
with an
> invaluable type of around-the-clock support that he has called the
> "chicken soup of the Internet" [7].
>
> Working with several colleagues, I initiated an observational
study to
> analyze the ways in which E-patients were using this new medium.
Since I
> am an epilepsy specialist, we decided to focus on an epilepsy
support
> group at the site Lester had created, BrainTalk Communities
> (http://www.braintalk.org) (Figure 1) [8].
>
> The BrainTalk Communities currently host more than 300 free online
> groups for neurological conditions (such as Alzheimer disease,
multiple
> sclerosis, Parkinson disease, chronic pain, epilepsy, and
Huntington
> disease) for patients across the globe. More than 200,000
individuals
> visit the BrainTalk Communities' Web site on a regular basis.
>
> This site is now owned and operated by an independent nonprofit
group,
> BrainTalk Communities, and is no longer formally associated with
> Massachusetts General Hospital.
>
> What we found surprised us. We assumed that most interactions
would be
> support related, with some members describing their medical
experiences
> and others offering active listening, sympathy, and understanding.
But
> while such interactions were an important part of the group
process,
> they were observed in only about 30% of the postings.
>
> In the remaining 70% of the postings, group members provided each
other
> with what amounted to a crash course in their shared disease,
discussing
> topics such as the anatomy, physiology, and natural history of the
> disorder; treatment options and management guidelines for each
form of
> treatment; and treatment side effects, medical self-management,
the
> day-to-day practicalities of living with the disease, and the
effects of
> their condition on family and friends (Table 1).
>
> A Source of Information
>
> Much of the information that the group provided to members was
similar
> to what I routinely provided to my own clinic patients. So I was
> surprised to learn that many of the clinicians caring for group
members
> provided considerably less information, guidance, and support. And
some,
> apparently, provided none at all.
>
> Statements such as "My provider is too busy," "My provider doesn't
> care," or "My provider doesn't seem to know about such-and-such"
were
> alarmingly common. About 10% of the members' posts spontaneously
> mentioned that they had been unable to get the medical information
that
> they needed from their own clinicians.
>
> When we surveyed members directly, more than 30% said that they
had been
> unable to obtain all the medical information they would have liked
from
> their physicians (Table 2). This was a primary reason for many
members'
> participation in the group.
>
> Some other types of information, especially practical tips for
living
> with epilepsy and the social aspects of the disease, went far
beyond
> what I had been providing for my own patients.
>
> I am a board-certified epilepsy specialist at one of the most
highly
> respected medical centers in the United States, yet I learned a
great
> deal about these topics from the support group.
>
> I now share many of the things I learned from group members with
my
> clinic patients.
> Table 1. BrainTalk Communities Online Epilepsy Support Group:
Types of
> Questions Asked by Users
>
> The BrainTalk Communities epilepsy support group that we observed
was
> facilitated by volunteer patient moderators, with little or no
> professional input. About 6% of the postings contained information
that
> some of our medical reviewers considered at least partly mistaken,
> misinterpreted, outdated, or incomplete.
>
> We observed that other group members frequently corrected such
> misinformation. And group participants appeared to understand that
they
> should not take uncorroborated statements as hard facts. They
seemed
> well aware that some postings were erroneous, and in fact seemed
to
> substantially overestimate the incidence of questionable materials.
>
> We observed no serious problems as a result of these questionable
> postings, and saw many reports by patients who had obtained better
care,
> prevented medical mistakes, or averted serious injury because of
the
> information and advice they received from fellow group members.
>
> We concluded that, as Ferguson and Frydman have suggested, many
> professionals have seriously overestimated the risks and
underestimated
> the benefits of online support groups and other online health
resources
> for patients, probably because they do not operate within our
familiar
> professionally centered constructs [9].
>
> What I've Learned
>
> In retrospect, the most important thing I (DH) have learned from
our
> online group was that patients want to know about, and in most
cases are
> perfectly capable of understanding and dealing with, everything
their
> physician knows about their disease and its treatments.
>
> After observing the group, I realized that I had been providing my
> patients with a very limited subset of what I knew about their
> condition. Today, there is nothing that I know about epilepsy that
I
> would hesitate to share with a patient. For example, I now offer
my
> patients an open and frank discussion of the very rare sudden
unexpected
> death in epilepsy syndrome.
>
> I had previously not mentioned this rare but alarming
complication,
> fearing that some patients might become overly concerned with it.
But
> once I discovered that BrainTalk Communities group members
discussed
> this topic quite openly and freely online, reviewing the
scientific data
> in a sophisticated way, I began to share my knowledge on this
topic with
> my clinic patients.
>
> My newfound frankness has been much appreciated. And none of my
patients
> have become unduly troubled by these discussions.
>
> I have also learned that an online group like the BrainTalk
Communities
> epilepsy group is not only much smarter than any single patient,
but is
> also smarter, or at least more comprehensive, than many physicians—
even
> many medical specialists.
>
> While some postings do contain erroneous material, online groups
of
> patients who share an illness engage in a continuous process of
> self-correction, challenging questionable statements and
addressing
> misperceptions as they occur.
>
> And while no single resource, including physicians, should be
considered
> the last word in medical knowledge, the consensus opinion arrived
at by
> patient groups is usually quite excellent. And if more expert
clinicians
> offered to consult informally with the online support groups
devoted to
> their medical specialties—as I now do—we could help group members
make
> information and opinion shared in these groups even better.
>
> Growing numbers of patients are perfectly capable of empowering
themselves.
>
> I had been taught to believe that patients could only
be "empowered" by
> their clinicians. And while I do believe that clinicians can help
in
> this regard by sharing their knowledge openly and by encouraging
patient
> self-reliance, it now seems quite clear that growing numbers of
patients
> are perfectly capable of empowering themselves, with or without
their
> clinician's blessing.
>
> Physicians and other health professionals should do all they can
to
> support them in this worthy effort.
>
> Table 2. BrainTalk Communities Epilepsy Support Group: Responses
to a
> Survey of Users
>
> As a result of what we've learned from these online patient
networks,
> our research group has developed a password-protected Web site,
> PatientWeb (https://fisher.mgh.harvard.edu/), for the patients
that we
> see in the clinic—all those patients with epilepsy who receive
medical
> care at the Massachusetts General Hospital and Brigham and Women's
Hospital.
>
> Thanks to what we have learned from these online groups, we plan
to
> pilot new ways for private, local online groups made up of
patients with
> the same disease and receiving care from the same clinicians to
> collaborate with each other, and with their clinicians, more
effectively.
>
> Conclusions
>
> Clinicians have overestimated the downsides, while seriously
> underestimating the benefits, of condition-specific online patient
> support communities. These free online resources now provide
invaluable
> services 24 hours a day, seven days a week, for patients across
the
> country and around the world.
>
> It would be unfortunate indeed if medical professionals let their
> uneasiness at this emerging trend toward patient empowerment and
> autonomy cloud their ability to assess the impressive benefits
these
> groups provide.
>
> Many patients are now ready, willing, and able to take a more
active
> role in their own care, and the care of others with related
diseases. By
> encouraging patients to do more for themselves and for each other,
> clinicians can help mitigate many of the negative effects of
> contemporary time-pressured medical practice.
>
> Thus, even though there may now be less time for the counseling,
> storytelling, support, information sharing, and empowerment-based
> training that was once a routine part of the typical office visit,
we
> can now help our patients obtain such services by referring them
to
> online patient networks.
>
> The distributed expertise of online support groups is by no means
> limited to the emotional aspects of the illness and to the
practical
> logistics of living with the disorder. It can also include current
> reviews of the literature, reports from the latest medical
meetings,
> accounts of behind-the-scenes activities at the best treatment
centers,
> sophisticated guidance on dealing with medical professionals, and
> excellent advice on dealing with complex aspects of medical
management.
>
> Few, if any, physicians could have created a system like BrainTalk
> Communities.
>
> Finally, I have concluded that few, if any, physicians could have
> created a system like BrainTalk Communities. As a tech-savvy
> non-physician intimately familiar with both the inner workings of
> medical care and the power of information technology systems to
create
> effective online communities, John Lester was less proprietary
than most
> physicians are about medicine's proper professional "turf."
>
> He was also less inhibited by professional biases regarding the
> potential value of the medical contributions that "unqualified"
> individuals might make. This is not an isolated occurrence. We
suspect
> that the intensely professionally centered enculturation most
physicians
> receive in their training and practice environments may render
them, in
> the words of John Seely Brown and Paul Draguld, "blinkered if not
blind"
> to the emergence of many promising new technocultural changes,
which
> currently present new opportunities for health-care innovation
[10].
>
> Thus, physicians who seek to innovate in these areas might benefit
> greatly—as I have—from joining forces with Web developers, Net-
savvy
> social scientists, experienced E-patients, and other colleagues
> unencumbered by the limiting belief systems that may result from
our
> traditional medical training.
>
> In light of their empowering social dynamics and volunteer
economics, we
> suspect that patient-led online groups may prove to be a
considerably
> more promising and sustainable health-care resource than
professionally
> moderated therapy groups.
>
> And we are convinced that networked work teams linking patients,
> caregivers, and medical professionals will be an important model
for
> future health-care innovation.
> Acknowledgments
>
> This article was written collaboratively but presents DH's point
of view
> and reflects his experience. The authors wish to thank and
acknowledge
> John Lester, Stephanie Prady, and Joshua Fogel for reviewing
earlier
> drafts of this article and offering helpful suggestions.
>
> References
>
> 1. Lester J, Prady S, Finegan Y, Hoch D (2004) Learning from e-
patients
> at Massachusetts General Hospital. BMJ 328: 1188–1190. Find this
article
> online
> 2. Fox S, Rainie L (2000 November) The online health-care
revolution:
> How the Web helps Americans take better care of themselves.
Washington
> (DC): Pew Internet and American Life Project. Available:
> http://www.pewinternet.org/pdfs/PIP_Health_Report.pdf. Accessed 5
July 2005.
> 3. Fox S, Rainie L (2002 May) Vital decisions: How Internet users
decide
> what information to trust when they or their loved ones are sick.
> Washington (DC): Pew Internet and American Life Project.
Available:
> http://www.pewinternet.org/pdfs/PIP_Vital_Decisions_May2002.pdf.
> Accessed 5 July 2005.
> 4. Fox S, Fallows D (2003 July) Internet health resources: Health
> searches and email have become more commonplace, but there is room
for
> improvement in searches and overall Internet access. Washington
(DC):
> Pew Internet and American Life Project. Available:
> http://www.pewinternet.org/pdfs/PIP_Health_Report_July_2003.pdf.
> Accessed 5 July 2005.
> 5. Fogel J, Albert SM, Schnabel F, Ditkoff BA, Neugut AI (2002)
Use of
> the Internet by women with breast cancer. J Med Internet Res 4:
e9. Find
> this article online
> 6. Høybye MT, Johansen C, Tjørnhøj-Thomsen T (2005) Online
interaction:
> Effects of storytelling in an Internet breast cancer support
group.
> Psychooncology 14: 211–220. Find this article online
> 7. Ferguson T (2002) "Expert driver" interview. The Ferguson
Report, No.
> 8. Available: http://www.fergusonreport.com/articles/fr00803.htm.
> Accessed 27 June 2005.
> 8. Hoch DB, Norris D, Lester JE, Marcus AD (1999) Information
exchange
> in an epilepsy forum on the World Wide Web. Seizure 8: 30–34. Find
this
> article online
> 9. Ferguson T, Frydman G (2004) The first generation of e-
patients. BMJ
> 328: 1148–1149. Find this article online
> 10. Brown JS, Duguid P (2000) The social life of information.
Boston:
> Harvard Business School Press. 330 p.
> 11. Norris D, Hoch D, Lester J (1998) An Internet forum for
epilepsy
> support: A survey of users. Clin Neurophysiol 39. Suppl 6 229.
>>
>>
>> ---


Saludos

Miguel
--- En
lyme_y_otras_zoonosis_cronicas_espanol@yahoogroups.com, "Cathy"
<fibrocat1957@y...> escribió:
>
> ENCONTRÉ ESTO EN CO CURE. Por cierto, espero no molestar poniendo
> las cosas que encuentro, Si no, por favor decirmelo ¿vALE?
> SLDS CATHY
>
> From ME Essential, Issue 100. October 2006 pages 20 and 21.
>
>
> Lyme Disease - let's dispel the myths
>
> LD specialist Dr. Darrel Ho-Yen urges caution over the bug that
can
> be confused with ME
>
> The Internet has fuelled hysteria about Lyme disease. Lyme
disease
> (LD) was discovered in 1975, with the first human case due to
> Borrelia burgdorferi being identified in 1983.
>
> Whereas many may know that I wrote the first book on ME, Better
> Recovery from Viral Illnesses, in 1985, and that this book is now
in
> its fourth edition, many may not know that my first scientific
> publication on Lyme disease was in 1989, and that our laboratory
in
> Inverness provides a Lyme testing service for Scotland.
>
> More importantly, I receive many emails, letters and telephone
calls
> on LD from all over the world. Such communications have one thing
> in common: patients are worried about LD. Such anxieties and
> concerns are based on what they have heard or read and what they
are
> being told by friends and relatives.
>
> These myths are many and varied:
>
> The Internet has the best information on Lyme disease
>
> This seems a very reasonable statement as the Internet has access
to
> the most experts worldwide. The difficulty is separating the
right
> information from the wrong. There needs to be judgement on what
is
> being said. Unfortunately, looking for the right information can
be
> like looking for a needle in a haystack. It may be difficult to
> find. In many cases, information on LD and ME is wrong.
>
> Doctors are ignorant of LD
>
> This appears to be an outrageous statement but has elements of
truth
> in it. LD is a recently identified illness and is described as "an
> emerging infection." This means that many doctors have not
studied
> this infection at medical school and that more information is
> emerging on this disease. This is not uncommon in medicine and
> indeed is to be expected. It also has to be balanced by the fact
> that not all areas of Britain have equal prevalence of LD. There
> are many urban areas where LD is very uncommon whereas in rural
> areas there is greater awareness and knowledge. Again, this is
not
> a judgement on the medical profession but simply a reflection of
> reality. Those doctors in rural areas have to diagnose and manage
> LD.
>
> Most ME is Lyme Disease
>
> LD is characterised by early and late disease. The clinical
> syndromes of early disease are well recognised, such as the
> characteristic rash (erythema migrans); whereas late disease has
> characteristic clinical syndromes (for example, dermatological,
> cardiac, rheumatoid), but also
> includes a fatigue state. Therefore, it is only the late disease
> fatigue state that has common features with ME. Overall, this may
> represent only 10% of all LD infections. It is certainly not the
> majority of LD infections and most ME sufferers do not have LD. In
> the Highlands of Scotland, we have the greatest tick populations
and
> it has been my routine in the investigation of ME patients to have
> them
> tested for LD. In this large series of patients who have had very
> significant exposure to ticks, the number of ME patients who have
LD
> as the cause of their illness is around 5%.
>
> Antibiotics can cure LD
>
> This is a very attractive proposition. The truth of the matter is
> that in LD, early disease is amenable to antibiotic treatment and
is
> curative. Unfortunately, late disease does not have the same
> response
> to antibiotics. In other countries, this has meant that prolonged
> treatment with antibiotics (often a year or longer) has been
> recommended. The very need for such prolonged treatment with
> antibiotics suggests that the success rate is not good. Indeed,
it
> is difficult to separate the natural improvement that occurs with
> chronic disease from the effects of antibiotic treatment.
Antibiotic
> treatment has limited success in late LD patients with symptoms
> comparable to that of ME. Instead, such patients should be
managed,
> as is explained in my book, Better Recovery from Viral Illnesses,
> fourth edition, www.dodonabooks.co.uk
>
> All laboratories produce dependable results
>
> All NHS laboratories in Britain have to be accredited by Clinical
> Pathology Accreditation (UK) Ltd. If there is a diagnosis of LD
> without such accreditation, the diagnosis is suspect. Many
patients
> are also seeking diagnosis by European or American Laboratories,
and
> many such laboratories do not have appropriate accreditation. It
is
> important to recognise that accreditation allows the user to have
> confidence in the report. Unaccredited laboratories can produce
> suspect results and may be influenced by the patient paying for
the
> test. Within the accredited laboratory, all of its procedures have
> to be reproducible and subject to internal and external quality
> assurance. This guarantees that quality of the product to the
user.
> Anyone receiving a diagnosis of LD should ensure that this is from
> an accredited laboratory.
>
> Misleading expert comment
>
> Experts have said that LD is ten times more common than is
reported.
> This is absolutely true. Unfortunately, this statement is usually
> applied to all LD infections: from asymptomatic, flu-like illness
to
> the well-defined clinical presentations. The number of patients
> that fall into the group of late LD with a comparable illness such
> as ME is small. LD accounts for 5% of ME patients in an area where
> there is great tick exposure. In future, if there is better
> diagnosis of LD, the amount of
> patients could double. However, the important consideration is
how
> these patients should be managed.
>
> Summary
> LD is a new, emerging infection. Much is being written and
> discovered about this infection, and most of it is exciting and
very
> helpful. Unfortunately, the Internet and certain groups have
> emphasised 10% of the information on LD rather than the 90%. It
is
> important that all ME patients have a balanced approach to
> information on LD, especially as the management of late LD
patients
> is similar to that of ME patients in which there are no obvious
> infectious disease causes. The answer is in making a balanced
> judgement, taking responsibility for your illness and sticking to
> guidelines. To blame others for not getting a diagnosis or
> appropriate management may not be helpful. In the end, it is a
> matter of what makes you better.
>
> *Dr. Darrel Ho-Yen is head of microbiology at the Raigmore
Hospital,
> Inverness.
>
>
> (Further facts)
> (Picture of an engorged tick "The culprit" a tick)
>
> Fears over Lyme Disease as ticks flourish
> From the Daily Mail, September 1st.
>
> Rising temperatures have sparked a boom in the number of ticks
> carrying a dangerous blood-borne disease, experts have warned.
> The increase in levels of the insect has put people in danger of
> contracting Lyme Disease, which if left undiagnosed can trigger
> serious heart and joint problems.
> The rise was noticed after scientists were instructed by the
> Government to investigate why increasing numbers of farm animals
> were developing a virus transmitted by the parasites. They found
> there had been an apparent rise in ticks in recent months in
Britain
> and warned this also had alarming implications for humans.
> Last year there were 600 laboratory confirmed cases of Lyme
Disease
> in
> England and Wales, however some believe as many as 2,000 people
may
> now be catching it every year. People are particularly at risk
when
> in forests or in long grass where they are more likely to be
bitten
> by the insects.
>
> The Department for Environment, Food and Rural Affairs (Defra)
> commissioned Professor Sarah Randolph from the Zoology Department
at
> Oxford University to investigate what was triggering the rise.
> Although her work will not be completed for another year, she
> already
> has results back from 136 locations across the country.
> Based on the findings so far, she concluded: "Evidence does seem
to
> indicate an increase in tick numbers. Everyone does seem to be
> concerned with an increase in incidence of certain diseases.
> Then there is also the very important issue of ticks' hosts which
> are mostly deer in the UK and also sheep and cattle."
> The disease is caused by a bacteria which ticks carry and is
> transmitted into the person when it begins to draw blood.
> Lyme Disease was discovered following a cluster of cases in the
> 1970s among young people living in Old Lyme in Connecticut, USA.
> However it is thought to have been around in Europe since the
1880s.
> It often begins with flu-like symptoms and then several days or
> weeks later 60 per cent of people notice an expanding rash. At
this
> stage it can be treated with antibiotics, but if it is allowed to
> progress it can become very difficult to beat.
> It can then lead to long-term fatigue, plus create problems in the
> heart, joints and nervous system.
>
> ME Essential October 2006.
>