board activity

[dereck72]

I was just checking the post count only like 242 people out of over 2600 have more than 10 posts? Whats going on are people shy? are they dead accounts? Not dead as in 6 ft under, but are they maybe people that have recovered? Its just kinda strange theres so many accounts that aren't participating. Makes me think that the MRF number really is accurate and thats the real reason we're not getting any real help.

[ladycolorado]

Hi Dereck. You pose an interesting question. I think with some new people this disease is hard to deal with. Perhaps they feel shy and reclusive still. perhaps they do not know what to say. Or perhaps they are still trying to undestand what is going on and just prefer to read.

It is true I have not posted in awhile. This is for a variety of reasons. I will explain.

As far as spilantanthes achmella the plant I have and am growing is doing fine under the skylight but it is getting colder here so it is more dormant and it is not growing very fast.

I do not want to kill it it has only borne two tiny flowers and I cannot harvest leaves because I am afraid I might kill it. So on that matter I shall have to wait.

My mother is fine but had some health problems. One is she is 72, broke her wrist and it did not heal well. It had to be operated on it is healing fine but it will be a little crooked. Needless to say I have been helping her around the house.

She also has digestive problems and perhaps needs to have one medicine she takes changed, reduced or eliminated her ekg showed her heart was beating slow. These issues concern me some.

I have been seperated for over two years and still no divorce filed. I am working on it as I have little rescources. As for the "spouse" he may as well be called useless. Getting anything out of him would be like squeezing blood from a stone. I do not care to elaborate further.

I first joined this board when there was like aporximately TEN members. If I read the current member count correctly, there was something like 3,335 members? Big change huh?

So I like to post when I feel like I have something important to share. With all these members I like to give them and new ones a chance to post and share too.

Many people like to discuss theories which is fine but to tell you the truth I really am NOT so concerned about who and or what caused it, where it came from etc. I really DON'T. I am more concerned about us getting as well and as strong as we can and having a decent quality of life.

I used to give alot of support on my own time for quite a long time. I have learned alot really. I do not know much I guess as I still learn new stuff every day. I email someone on here I do not hear back from them and have had no requests from anyone and really no pms from anyone here.

So I feel kinda useless on that front. It is ok because I know there are many nice caring people here who fill this need for others. I am glad and like I said there is much interesting info people post here as well.

I do still take medicine and am fine. I get tested and all is fine regarding my tolerance of them. Yet some people think I should just go off everything and do not understand that I have this disease BAD despite the fact that it is well controlled.

What I have been doing IS important as my treatment can help future sufferers. Perhaps it will also help for this disease to be FINALLY recognized by the mainstream as well. That this disease is a very REAL and that it can be most debilitating.

I am still seeing a good doctor and I am happy to say that I am improved enough that I only have to go for checkups once every 3 months. My medicines are MUCH less than they used to be and costs have gone down considerably.

I also want to report that yes I DO still take lithium orotate natural supplement to protect brain function and for over a year have had ZERO negative side effects or interactions.

I cannot afford all the naturals some take. This does not mean I do not endorse natural treatment. Also cheap and effective treatment as many of us are poor.

I juice organic fruits and veggies, I eat pretty well and I go to ethnic markets to find herbs, spices and good food. There is no real health food store in my area. So I make good with what I have available.

The search engine on this board is terrible. I search it and I do not find what I am looking for most of the time. This is frustrating.

I want to say everyone is really nice here and I do love this place and everyone here. Also that YES I am still around. Although I am not cured my life is much more tolerable regarding Morgellons Disease. If I had not found this place it would have been a much different outcome indeed. Thanks.

I miss alot of the folks I used to know on this board. I really do. With the Holidays and everything I have had much going on. My nieces are currently visiting. I can confidently say after two years I have made NO ONE sick.

Dereck I hope you are well and thanks for asking this question. It is a valid one. Today I came in to post something I found this A.M.

If anyone pms me when I check private email I get notification of it and I will respond.


(LC)

P.S. I also want to let everyone know that I am NOT a member of lymebusters at ALL. This person uses this username all in caps. This is NOT me. I do not think the individual did it out of malice however. This is just so anyone who reads there knows this.

I also want to add I DO like this place and you will hear from me from time to time.

[Sadsack]

Dereck -

I have noticed the same thing on the other boards as well. Many people sign up and never even return to the board, nevermind become active.

I've actually tried to track down about a half dozen people on one board who haven't posted in over two years. (That group does not give you the same level of member statistics, but make it possible to email them "blind" via the group).

Only one responded. None of the emails bounced.

I also started a topic on another board asking the same question (about a year ago). On another, I asked the mods if there was anyway that they could contact these ghose accounts and try to find out what happened (they declined).

Judging from some of the more prominent people in the Morgellons world over the years, I think that it is a scattering of issues.

First, some have become too ill to participate. Some have given up. Some find they do better when they stay away from the boards (I can understand that). Some have improved to the point that they want to put this behind them as much as possible. Undoubtedly, there are many suicides.

I would love to know the answers myself. I am extrapolating from the few that I know about.

On the other hand, I personally know two people who have symptoms that are not full blown. They live with them and largely ignore them. It was what I did for years before my symptoms exploded into the sci-fi realm and I started researching.

Or there are people who have circumscribed symptoms. Read through this "Foot Blog" and you will see Morgellons: Foreign Body Hair Abscess of the Foot: A Case Report

Then there are the people who have been fighting "scabies" "mites", etc, for years...

So I DO believe that this is way under-reported. And I actually know a lot of people who don't have computers (seems almost like not having a telephone!)

SS

[Sadsack]

LC -

You were one of the people who reached out to me in Sept '07, when I first joined this group. You were so kind and supportive - I was scared to death!

Thank you so much. I hope that I am carrying on that support to other newcomers.

SS

[dizzy dame]

I agree with SS, so many people join because they are scared out of their wits by the symptoms they have. They are looking for information and may not want to reveal a lot about themselves or they just don't know what to say. I know that I don't always feel that I have anything to contribute other than support for the newbies and those needing a kind word. I am following others suggestions for treatment and doing much better. I thank God daily for this site and the very smart, wise people on here. DD

[Frankybme]

Dereck these senior members have posted some fine details all ready on the subject. But I can offer a little more insight as well, as I have spoken too many of them via instant messenger.

• Many are not very good computer users and just barely know how to get an email. So they sign up and read. It still makes them feel like part of the community by signing up.
• Many health wise, due to and not due to morgellons, has got worse and no longer can or will post.
• There is always an assortment of people joining to just post spam and to just try to sell products and promote sites.
• Here is a big issue, which I will be dealing with in the next month and New Year. MANY people are afraid to post because they are afraid to be jumped on by over aggressive, over sarcastic comments. I know in this type of site we are going to deal with many sensitive fragile people, but there still needs to be some balance, some patience for the sick.

Hope this give a better idea Dereck.

[ladycolorado]

I think most of Morgellons Friend ideas are sound. However even a dollar a year fee I might be locked out. Unless this site takes food stamps.

However a legitimate link or something for donations would be a good idea. How to best set this up so it would present no problems is another matter. I am not gifted regarding such things.

If this site is a not for profit one I am sure there would be a legitimate and legal way to set this up and I do honestly believe it is a GOOD idea.

(LC)

[Sadsack]

Morgellonsfriend -

It seems you are describing pretty much what the Morgellons Research Foundation does - i.e., collects donations to fund research. They have a Board of Directors which includes a medical staff. They conduct and publish research.
The Charles Holman Foundation is a little different, but they, too are a 501 (c)3 with a medical board. They do not develop their own research projects, but they fund other researchers, like Dr. Wymore at OSU. They put on the Annual Morgellons Scientific and Medical Conference.
Neither of these boards have a discussion site.
Despite the similiarity in name, MDR bears little resemblance to the MRF. There is no medical board of directors, does not sponsor any events, is not involved in any activism or professional scientific research.
MDR is more similar to Lymebusters, Morgellons Sanctum, or Morgellons Group in that it is a discussion site for sufferers and no more. MDR has only one moderator who has to manage an extremely busy site. As a result, in many respects the group itself manages certain problems that arise, such as routing out spammers who may find their way into the group a bit under the radar.
The group also manages issues like calling other members on certain types of behavior, like dominating the board through excessive posting. One poster can bury a board through post after post, thread after thread, making it very difficult for others to participate.
The ratio of moderator to activity is higher on other boards, so that members aren't as active in monitoring each other. But there is a downside to that, in that some boards get "over-moderated", almost to the point of censorship of ideas that don't conform to their own ideas.

SS

[jonsi]

Franky has this site covered. A while back he said he didn't need any donations to keep this site going. I'm glad you are back Franky! I hope Carla knows how much I (we) appreciate her too.

Pah-leeze! Let's keep this site separate from the MRF/Holman Foundation. I've been to the Austin meeting... Wymore... I've said it before. Now I'll zip my lips cuz my Grandma told me that if you can't say anything nice, don't say anything at all.

Homeopathic/natural medicine has worked for my family. I respect LC's opinions too (she reached out to me when I first joined this site & I will forever be thanking her. HI LC!)

Peace,
~jonsi

[Sadsack]

Jonsi -

I don't think anyone is suggesting a "merger" of any groups. The only existing affiliation is between LB & the MRF.
The point I was making is that there are several niches that fulfill various purposes, and we are all free to choose.
Regardless of anyone's opinion of the work of various researchers, they all make contributions from their own perspective. We can't throw the baby out with the bath water because there is a particular issue that we might have with them.
I am very unhappy about the article published by the MRF this past year. It blurs the distinction between DOP and Morgellons rather than separating it. I'm also wondering where the "Phase 2" study is, and even wonder why "Phase 2" wasn't "Phase 1". I can speculate all I want, but only the people within that organization know for sure what the reasons are.
On the other hand, I am SO grateful to the MRF for putting this thing on the map, and that can never be forgotten.
Dr. Wymore has also contributed more to whatever public acceptance than any other researcher. Like it or not, the mainstream media is not going to go to Rense for their information. They are going to listen to University-based, PhD level researchers with iron-clad credentials. There is NO ONE else with this status. Not even Dr. Staninger, despite her PhD and REIT/NREP credentials.
Do the people who appear on the pages of Rense make contributions? Of course they do. But they are not the ones who are behind the pressure to get public dollars into solving this horrible travesty. If anything, much of the alternet contributes to public perception that we are a bunch of loonies.
Raising questions about what various groups/researchers are focusing on is legitimate. Bashing them, especially on the basis of intangibles such as personalities, etc, has no place in this.
If perfection exists, it is in Heaven and not among mortals. When we engage in tearing down any one of these groups or individuals, we are hurting ourselves.

SS