This List - Why It Exists, and What the Focus Is

[Guest guest]

Dear Readers:

We've had a steady rise in membership levels, and for the benefit of

newer as well as long-time readers, I wanted to take a bit of your

time to restate the reasons this list exists.

General background:

I started this list as an adjunct to the ACOR list on CLL, started in

part by Barbara Lackritz (aka GrannyBarb). I wanted to post medical

abstracts, news stories, press releases, and other articles on the

subject of CLL. At the time, the ACOR CLL list focussed on patient

support, patient-to-patient communications, announcements of

meetings, and the like, with a few articles on the subject of

research included. It remains to a large degree the same way today.

Obviously, it was and is the largest CLL e-mail list on the web. I

have remained a member of the list, and read as many posts there as I

can every day.

The focus of is on research and advocacy, with an

emphasis on the former. I try to cull medical journal abstracts,

reports in general publications, press releases and so on looking for

articles on CLL, research on CLL, information about complementary

treatments, nutrition, and cancer in general. I'd like more advocacy

in the future. If I'm well enough, I'd like to go to Washington DC

in the future for 'Blood Cancer Advocacy Days'.

I am a firm believer in 'evidence-based medicine'. What this means

is not the isolated report of someone who says they have a 'radical

new treatment that will cure CLL', but research that is published in

peer-reviewed medical journal.

I keep an open mind about things, not rejecting seemingly far-fetched

ideas out of hand. I just demand repeatable (and repeated) research

on the subject.

On posting:

Any member can post relevant information on this list. If you find a

journal article I've missed, a news story on CLL, sources of, say,

EGCG (a substance found in green tea), those posts are welcome. We

can have an interchange of ideas here, so questions of a general

nature concerning CLL are certainly OK.

Since the GrannyBarb list exists, that seems like the best place for

patient support interchanges.

Announcements of coming CLL patient meetings are welcome here. Of

course, since the GrannyBarb list membership is eight or nine times

as large as this one, more people will be informed via that list.

Discussions about topics raised here:

I certainly would enjoy some discussions of the topics posted here.

For instance, since green tea and EGCG are certainly in the news, it

would be interesting to learn if patients have any experience using

the substance, if they have any opinions of the method of action of

such, and so forth.

This differs, I hope, from other lists that report on Mexican

clinics, detoxification, etc., in that green tea has been shown in at

least one paper to cause apoptosis in CLL cells, in vitro. Anecdotal

data is very suspect.

On the difficulty of the subject matter:

Since the majority of posts here are abstracts from medical journals,

sometimes they are difficult to follow. I certainly have trouble

understanding some of the abstracts.

Science is so specialized that people outside the field are likely to

be unfamiliar with much of the terminology of papers.

I find it helpful to re-read difficult abstracts, to consult a good

medical dictionary, and to just gloss over parts that I will never

understand, to get to the 'meat' of the article. Obviously, I don't

post everything that comes up on a search of 'CLL'. It must at least

be something I can understand.

I try to explain a few of the terms as I can, as time and my

knowledge permit.

In summary:

Sorry to be so long-winded. Welcome to newer readers, and many

thanks to those who have stuck with the group since it was started.

(PS. Just a reminder...If you have any 'housekeeping' questions,

please write to me at scott_fs@..., instead of using the list

to ask such questions. Thanks!)