Hiya Auntie M,
Welcome as always.
I do recall one conversation with you during which I came down on you pretty hard... and rightfully so.
At the time, you stated that you were seeing multiple docs who according to you, were all recommending different treatments. I asked you who was in charge of making sure that you were not taking things that offset or multiply each others' effects?
Trying to get people to focus and first do no harm has been my foremost concern here from the beginning.
I know that you have improved greatly since adopting the nutritional (Logos) portion of this protocol (along with the other things you are doing), and that gives me great satisfaction.
As you pointed out, the changes being made to this site are necessary to reduce confusion and to help make the site easier to navigate. I don't claim to have all the answers, and all you have to do is read the many pages of posts here to see that we are not trying to withhold or suppress information.
We have been quick to post live links to other websites and blogs that we feel are making valuable contributions in understanding Morgellons, such as the important work of Mary Lettaio's research group, Pamela's Morgellons Focus site and Mr. Common Sense's blog.
The new rules also provide notice to those who would come here with deceitful intentions that such behavior will not be tolerated.
This site is a safe place where lives are being changed for the better, and I feel a tremendous responsibility to protect its integrity.
I wish you luck with your new book and website. Please let me know if I can assist you in any way.
Good luck and God Bless,
Thanks for your responses. What you don't know are conversations that took place on the telephone with people I met through this forum. So, yes there has been rude behavior towards me and I have expressed my opinion about it.
As far as the rules of this forum, I obviously have to abide by them to get posted now. I continue to feel strongly that NOT posting information that has helped people heal elsewhere that does not correlate with Mel's protocol, but would add new information about Morgellons and products, etc. that are helping people truly heal, that withholding this information is NOT RIGHT. This disease manifests differently topically with many people. Information about different topical and internal solutions, for example, to provide comfort while the internal body is recovering (long term process) would be beneficial to people suffering here. I, of course, absolutely believe anyone trying any of what is recommended or posted here should do it under the supervision of a competent health care provider. Mel is right in continually saying DO NO HARM. I see a competent health care provider every week and she is monitoring my progress.
I have been blessed to be guided to additional sites and information now besides Mel's. His was the first site to which I was directed personally by Dennis Richard of A2Z Corporation when I was extremely ill. Mel was one of my life lines at that time.
Even if individuals cannot post about what has been helping them, they should be able to post websites that link to vital information. I can email Mel these websites and he can choose to add them somewhere else on the site if he chooses. I do understand that information conflicting with or adding to Mel's information can be confusing to those who are new to the Morgellons scene or very ill, as the illness can take a toll on one's cognitive abilities and coping skills. So I understand the reason for the rules.
What I have decided is to start my own blog site for women recovering from Morgellons (I need to get a domain name and have not decided on one yet.). There are issues specific to women, which may be uncomfortable for some to share here and elsewhere.
Mel has been so incredibly generous in allowing people to email and call him. There are women, because he is a man, who may not be able to reach out to him. There is a silent epidemic of sexual and physical abuse towards women in our country and because of this, many, many women who have this disease or will get it may not have the ability to stay in the communication process here because this site and others are created and hosted by men. There may be other sites hosted by women. I know two where they sell products specific to healing Morgellons, but do not have active blogs.
I see a need for the site I am going to provide. I'm also going to write a book and publish it on Amazon about the psychological effects of this disease and different ways to cope. I am developing that outline now and have already signed up on createspace.com to publish there. Anyone who wants to contact me about any of this can email me at firstname.lastname@example.org. Please put in the email heading, 'RESPONSE TO POSTING,' or I won't open the email.
I will return to this site to catch up on what people have posted in order to learn more. Thank you all for taking the time to read my posts and to offer support and valuable information to me. I am grateful.
There are 5 posts in this thread. Enter your monthly access code to read them all and join the discussion. 100% of the funds go to making this community possible.
Visitors Right Now