If a post has received a "Non approved admin stamp" at the top of the post, then this means that the forum founder and advisors/moderators do not condone or necessarily agree with the information in this post. By receiving this stamp, the admin is issuing a warning that the information in this post is not approved, should be considered the poster's opinon, NOT FACT, and the post is at risk of removal from the forum.

Many people have the skill to write in an authoritative manner, as if they are experts. On this forum, however, we are not mast cell disorder experts and thus it must be remembered that the posts on thie forum are opinions, not facts, and that everyone must decide on their own if they choose to believe what they read.

The Advisors/Mentors on this forum are here to ensure that we stay on topic and that no one is being misled. If a topic is too off topic and does not belong on this forum, it will be removed.

Multiple medical issues could mimic or exist with mast cell disorders. Pleake keep in mind that this is a mast cell forum, and for in depth discussion of other conditions, the "off topic" category should be used or it should be posted in another forum other than this one.

It is required that when citing quotations or information from a source, that the information be documented within the post with a link to the source. At the admin's discretion, the information may be deleted if it strays too far from the topics of this forum or is incorrect or misleading.

Any website that sells cures or information should be considered suspicious and is not allowed to be advertised on this forum.

Please pay attention to citing or believing information that was published years ago. Mast cell disease research has moved quickly over recent years and an article published 2 years ago will already risk being outdated.

When in doubt, contact Deborah before posting and ask her about it.

Marcia,

Your points are very well taken and I agree with most of them. Using terminology and difficult vocabulary is a fine skill to have. However, when that terminology and vocabulary is used in a manner that allows people to make the assumption that the person posting is either a doctor or that the information is fact rather than the poster's interpretation of what he/she read, then that is where we draw the line.

What if I happened to share with you that one of the causes of Masto is eating tomatoes and decapod crustaceans at the same time.  I read a journal article by a very well known immunologist that studies show the probability of this occurring. In fact, I will look up the journal and cite it, but the article described the toxicity levels of the decapod crustacean when combined with the genus Lycopersicon results in degranulation of mast cells....

Okay, so by now you are thinking, "What? There is a known cause for Masto?" and you are opening a new window to google decapot crustaceans and Masto...or you have figured out that I am being funny to prove a point and that I made all of that up. (NO, IT'S NOT TRUE EVERYONE!) If you reread my paragraph, however, you will see that I wrote it as if it was fact. I did not phrase the sentences in ways that made clear that this was my opinion and not fact. That is what I am referring to, and that is what I will either put my new stamp on or remove it entirely from the forum if I find it harmful enough.

Thanks for the clarifications, Deb!  This should help resolve some of the issues that have come up lately.

I've noticed that often it's the language used or the words not written that can cause misunderstandings about what is being said and who the poster is.  Sometimes a question or comment can solve the problem or rile up someone simply by how something is said rather than what is said.  For example, I commented on a post by pointing out that there was no citation and no information about the author and questioning the motives of the author.  It would have been better to have simply asked her if she would please cite the source of the slideshow and a little about the author's credentials.

Here are some suggestions to avoid posting mis-communications:

--Presume that people are well-intentioned unless you are convinced otherwise over time.  In that case, PM our wise administrator (Deborah) and ask her to take a look.

--Be compassionate.  Remember that people are often struggling with health challenges, brain fog, and just trying to get through the day.   It would be expected that someone might write something in an insensitive way because they simply don't feel well and are grumpy that day or if it's a full moon or there's just some difficult stress in their lives.

--Try not to impulsively dismiss someone's symptoms, concerns, ideas, or theories without thinking about it for a while.

--If you don't agree with something posted, take a time-out to think about whether there's something YOU don't understand or missing information.

--Use phrases liberally, e.g.,
"In my opinion....,"
"In my experience....,
"According to Dr. ____....,"
"From what I'm reading....,"
"When I asked the expert, (name), he/she said....,"
"This is only my theory....,"
"This is what works/worked for me...., "
"This might not work for you....,"

or other qualifying statement before saying what you think.

--Ask a question instead of making a judgment.  Written communication is so imperfect!  Maybe someone didn't know he/she wasn't getting the point across or was being misconstrued.

--Concede that you can't always be right.  We all have misconceptions, missing pieces of information, or incorrect information from time to time.  I've been humbled periodically on this forum and realized I jumped to a conclusion or had misinformation.  It's always okay to admit an error and apologize.

I'm certainly not consistent in any of this, but it's my opinion   that these things can help keep this forum a really friendly place with people who care a lot and are united in trying to find answers so everyone can feel better.

Hi Ruth
(In my opinion), The only people who need to walk on eggshells, are the ones here to push their own agendas/websites/businesses not inline with the purpose of this board. The rest of you have no reason for concern. Especially you Ruth! Your posts have compassionate answers and from what I have seen, you have great advice
hugs
Ramona

Ruth, I don´t think the issue really is so much that there are bunches of people pushing their own agenda - we get few here and most are just patients trying to find answers.   But the problem is that there are websites which get into raising theories which are unfounded upon research, who are pushing cure-alls, insist upon arguing and dickering over who knows more and who is more right, and an endless pressing and pushing and arguing that has no real purpose.  I have been on sites where the members were stomped on by certain groups if they raised any kind of opinion which was not their own.  I´ve been on others where there was competition to show who is more knowledgeable than the other.  Another site loved to argue theories as though they, being the patient, but without any medical training, was going to somehow magically come up with thoughts and theories that the proper authorities hadn´t yet thought of merely because they were God´s gift to research!  They acted as though they were authorities themselves even though they would take one little bit of research and run with it twisting it around where there was medical possibliity to occur!!!   These kinds of sites end up meeting an emotional/psychological need of these people in that they have lost a great deal of their dignity and previous life to their illness and they are trying to find some kind of means to replace what they had lost.  

These kinds of site have their purpose, but this is not what we are all about.  This is why some patients will outgrow us and move on, because we aim to try to meet the needs of the patients who are in the beginning of their search and those who wish to continue finding understanding and answers to their masto.   We don't dissuade discussions and theories and I'm certainly not one to do this because I've become a researcher and have high level doctors now who are recognizing that I'm moving in this area.   However, there must be balance and this is what I am always seeking for I fully well know that I'm not a doctor and don't have any training to be so, even though all of my doctors are now pushing for me to study medicine.   This is why we are finding ourselves challenged because the internet has provided a means for patients to become informed and knowledgable about their illness, however, the one thing we always insist is that of speaking with our doctors, having their input on our cases and also by backing new things with research.   It's important to not just go out on a limb with research, however, because it's not balance and established yet and it needs doctor input to help give it balance.   This is why were absolutely stand on treatments and methods which have been established already by our masto researchers, and when I mean our own masto researchers, I'm not talking about people who think that they are masto researcher who have come up with theories from the research of other researchers connecting the various diseases and then calling that theory by their own names!  The established masto researchers have paper after paper which proves their work and knowledge and its to them whom we depend to know how to deal with our disease.   We can't rely upon other doctors, even if they are PhDs, to fully understand the mastocytosis patient even though they know about the disease!

A good example of this are my reactions to contrast!!   I've reacted horribly to CT contrast, neuclear medicine contrast and now MRI contrast.   I had to face an MRI recently and I didn't want to do it but an authority in cardiology who knows my case and knows plenty about mastocytosis reassured me that I would not react.  He's still scratching his head over my reaction!!!!!!!!!!  

It's not that other doctors in immunology, rheumatology, hematology, etc aren't excellent doctors - that's not the case.  It's that they are not authorities or experts in mastocytosis and therefore they don't understand the disease well enough to know how to treat us!!  Accepting advice and suggestions for treatment from these sources is plain dangerous!!   And I've had this happen with me that well meaning doctors put me into danger merely because they dont' understand masto.  

This is why we are sticklers that if a member is here for the pure reason to argue or press their own beliefs and treatments on others that this is not the place for it's dangerous especially for the person who hasn't a clue about their disease.  It places them into danger, can end up misleading them and who know what else.   We, as members of this forum, and not only the leadership, must consider how dangerous our illness is and how easily someone could get into trouble if what we tell them goes wrong!!!   We don't mind the stimulating conversation of raising theories, etc.  But there comes a place where you also have to back down and say, perhaps this isn't meant for this site.  

So, this is why this stamp has been considered, it needs to be an advisory for others that this could be controversial.  

I hope you and others understand.


Lisa

Thumbs up Deborah!

Joan and Ruth, I really appreciate your thoughtful posts to this thread.

Gail... an occasional poster   : )