Re: Top 10 Best/Worst Treatments for CFS: now on CFSResearch Forum

[Guest guest]

Hi all,

I think this is a very good idea. Thanks Nico.I somehow have difficulty to

follow forums. Format is different,page down and ups take time(I have slow

dialup connection) and I get more tired when I folllow forums. My proposal

would be to create threads at cfsexp and cfsresearch with this header. If

many would agree. What do you think?

Thanks

Nil

Top 10 Best/Worst Treatments for CFS: now on

CFSResearch Forum

> Hi,

>

> We are currently discussing how patients have experienced various CFS

> Treatments on the CFSResearch Forum.

> Current Topic: Top 10 Best/Worst Treatments for CFS.

>

> Direct Link to this topic on the Forum:

> http://www.cfsresearch.org/forum/viewtopic.php?t=181

>

> I try to get an idea what patients have tryed, what was helpfull and made

> you feel better and what absolutely didn't work.

> If a lot of patients post their experience to the Forum, we should be able

> to get a good idea what CFS patients are currently taken or what they have

> tryed in the past

>

> Note: Registering at the Forum is not necessary for posting messages.

Enter

> a self-choosen name in the Username field.

> All postings are 100% anonymous. You can of course always register as well

> and follow the Forum.

>

> You can find our Forum at:

> http://www.cfsresearch.org/

>

> Nico Vanden Eynde

>

>

>

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

[Guest guest]

Nico,

I read your forum notes. You mention that mercury detox supplements made you

worse. Than what did you do? Did you stop doing anything about it? Are you

still mercury poisoned? Thanks.

Nil

Top 10 Best/Worst Treatments for CFS: now on

CFSResearch Forum

> Hi,

>

[Guest guest]

Nico,

I read your forum notes. You mention that mercury detox supplements made you

worse. Than what did you do? Did you stop doing anything about it? Are you

still mercury poisoned? Thanks.

Nil

Top 10 Best/Worst Treatments for CFS: now on

CFSResearch Forum

> Hi,

>

[Guest guest]

Hi Nil,

I try to offer the forum as a low-volume alternative for the discussion

groups that often have high number of postings.

For very sick patients, this is too much to follow, that's why I created the

forum.

Also, on the Forum, you can read only the topics of interest for you, you

don't have to read everything.

I have no plan as for posting threads of the Forum to various discussion

groups.

This would not be fair for the members that post to the Forum.

I see the forum as an addition to the discussion groups, more topic related.

As for the Forum, it is very fast, as fast as the CFSREsearch Website and I

have tested, is workable with dial-up connections since I have avoided the

use of images as much as possible and no HTML is allowed on the board.

The layout of the board is stored into your browser's cache, the first visit

can be a little slower, but this is with every website you visit the first

time.

Nico

-----Oorspronkelijk bericht-----

Van: Nymphaea/formerly nil [mailto:ng2113@...]

Verzonden: zondag 22 februari 2004 12:24

Aan:

Onderwerp: Re: Top 10 Best/Worst Treatments for CFS:

now on CFSResearch Forum

Hi all,

I think this is a very good idea. Thanks Nico.I somehow have difficulty to

follow forums. Format is different,page down and ups take time(I have slow

dialup connection) and I get more tired when I folllow forums. My proposal

would be to create threads at cfsexp and cfsresearch with this header. If

many would agree. What do you think?

Thanks

Nil

Top 10 Best/Worst Treatments for CFS: now on

CFSResearch Forum

> Hi,

>

> We are currently discussing how patients have experienced various CFS

> Treatments on the CFSResearch Forum.

> Current Topic: Top 10 Best/Worst Treatments for CFS.

>

> Direct Link to this topic on the Forum:

> http://www.cfsresearch.org/forum/viewtopic.php?t=181

>

> I try to get an idea what patients have tryed, what was helpfull and made

> you feel better and what absolutely didn't work.

> If a lot of patients post their experience to the Forum, we should be able

> to get a good idea what CFS patients are currently taken or what they have

> tryed in the past

>

> Note: Registering at the Forum is not necessary for posting messages.

Enter

> a self-choosen name in the Username field.

> All postings are 100% anonymous. You can of course always register as well

> and follow the Forum.

>

> You can find our Forum at:

> http://www.cfsresearch.org/

>

> Nico Vanden Eynde

>

>

>

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

[Guest guest]

Hi,

Indeed, the supplements made me very ill. I have discontined this treatment,

the pain is too hard, I don't have the mental and physical energie anymore

to cope with months or years of detoxing.

Yes, I'm mercury poisoned.

Nico

-----Oorspronkelijk bericht-----

Van: Nymphaea/formerly nil [mailto:ng2113@...]

Verzonden: zondag 22 februari 2004 12:49

Aan:

Onderwerp: Re: Top 10 Best/Worst Treatments for CFS:

now on CFSResearch Forum

Nico,

I read your forum notes. You mention that mercury detox supplements made you

worse. Than what did you do? Did you stop doing anything about it? Are you

still mercury poisoned? Thanks.

Nil

Top 10 Best/Worst Treatments for CFS: now on

CFSResearch Forum

> Hi,

>

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

We are on the same boat than. I think our cases are similar as I also can

not tolerate ascorbic acid,chlorella,probably b12(not sure yet,still

testing). I also had times I could not eat garlic. Thanks God I can eat some

lately.I am planning to try NDF.Somebody who could not tolerate Chlorella

tolerated it well. So,I will give a try.

Thanks

Nil

Top 10 Best/Worst Treatments for CFS: now on

> CFSResearch Forum

>

>

> > Hi,

> >

>

>

>

>

>

> This list is intended for patients to share personal experiences with each

> other, not to give medical advice. If you are interested in any treatment

> discussed here, please consult your doctor.

>

[Guest guest]

Hi Nico

What is the cfsresearch group compared to cfs_research?

I already find it difficult that there is , CFS_RESEARCH, and

other such as co-cure. People often post to all of them, so I get every

research study two or three times, and often when people ask a question they ask

it multiple times. In fact I posted a very detailed (Top 10 things that helped

me) to the group, but I didn't even know about your group. I

know that some groups splinter out because they aren't happy with the moderation

of a group. But as patients it is hard to keep track of them all.

I don't question your right to have another group, but can you explain how it is

different and why it was created?

Thanks

Doris

[Guest guest]

Never mind, I see you already answered this for Nil. Sigh. The problem of

course is that what starts out seeming like less messages for people turns into

more because people post the same thing on all the groups. And there will be

cases where people are discussing things on your new group and are missing

knowledge of people on this group. Or they will talk there some, then jump over

here and we won't know what was discussed before. This already happens between

cfs_research and cfs_experimental. Oh well, as I said you have the right to do

what you want. But you have my opinion for the record.

Doris

---------------------------------

What is the cfsresearch group compared to cfs_research?

I already find it difficult that there is , CFS_RESEARCH, and

other such as co-cure. People often post to all of them, so I get every

research study two or three times, and often when people ask a question they ask

it multiple times. In fact I posted a very detailed (Top 10 things that helped

me) to the group, but I didn't even know about your group. I

know that some groups splinter out because they aren't happy with the moderation

of a group. But as patients it is hard to keep track of them all.

[Guest guest]

Hi Doris,

CFSResearch.org is the website http://www.cfsresearch.org/ that offers free

Full-Text articles on CFS, Mycoplasma,Chlamydia and Rickettsia Infections.

The website also has a discussion Forum ( or called Bulletin Board ) for CFS

Patients.

Except that I was the founder of the CFS_Research List on groups many

years ago, the website and the List are not related to eachother.

I sometimes post a message or an announcement to the CFS_Research list but

that's all.

I'm not the owner neither a moderator.

I had to let go the ownerchip+moderation of the CFS_Research list about 1.5

years ago when I became too ill to combine the list with the website and

other things.

So, I have not created any new discussion groups, there are more than enough

discussion groups on CFS.

A few months ago, I have upgraded the CFSREsearch Website with a Forum for

CFS patients, that's all.

Reasons for creating this Forum have already been explained in a previous

posting.

Nico

-----Oorspronkelijk bericht-----

Van: Doris Brown [mailto:dorisbrown9@...]

Verzonden: zondag 22 februari 2004 22:15

Aan:

Onderwerp: Re: Top 10 Best/Worst Treatments for CFS:

now on CFSResearch Forum

Hi Nico

What is the cfsresearch group compared to cfs_research?

I already find it difficult that there is , CFS_RESEARCH,

and other such as co-cure. People often post to all of them, so I get every

research study two or three times, and often when people ask a question they

ask it multiple times. In fact I posted a very detailed (Top 10 things that

helped me) to the group, but I didn't even know about your

group. I know that some groups splinter out because they aren't happy with

the moderation of a group. But as patients it is hard to keep track of them

all.

I don't question your right to have another group, but can you explain how

it is different and why it was created?

Thanks

Doris

[Guest guest]

Nico,

I have one more question to you. You said that you could not tolerate B12.

Which form was that? Have you tried hydroxy form?

Thanks.

Nil