So why does the MRF speak in parables?

[EvDownJr]

Obviously the medical community at large has failed to assess the severity of those who truly suffer from this disease.....

The CDC does not have a clinic and its lawyers refuse to allow it speak to my physicians.

Then I ask myself, why the "Morgellons Research Foundation" continues to speak in parables, write mysterious treatment protocols that disappear from its website days later without explanation. They have an entertaining scientific research team and good outsourced PR writer speaking of prions one year, shifts towards targeting pneumonia in '07, only to defer to an incredulous vanishing theory of "anti-heleminth" medications. What the h$ll is one to bring to my practitioners while one can still be afforded?

When one truly has this syndrome to the "T" and is really far along, there is no debunking, no divorce of affiliation, no denial possible. So they ask us wan sufferers to campaign ourselves against a cracked medical community h@ll bent on empiricism??

For someone who is far along in this scourge, sorry but it is presently F%CK@D up situation. I'd be sorry to communicate like this but who remains our unyielding advocate?

[tcmgpt13]

I think we all have to look in the mirror to get the answer to your question. It is we who all along have been our own unyielding advocats for morgellons, even putting out some of the first information of what has worked even partially against it. In every respect whatever has been done about morgellons has been done by individuals (including those few doctors) taking up the flag and planting it where they think it will do the most good at the end of every skirmish. Every battle leads us closer to victory. MRF is out there trying find out what this is, and I am sure that theories change as they get closer to understanding what this is. Whether or not that will lead to a cure right away is yet to be learned. I do not think it is deliberate on their parts to change their minds about what protocol to pursue (I do the same when experimenting with herbs--it is a walk in the dark without any roads much less any signs). Right now, everything probably changes as quickly as the wind does before a storm. The storm may be that the environment and the food supply have been so altered that nothing will ever be the same again. What happens when John Q. Public finally becomes aware of that?

I hear your frustration which we all seem to take turns having, but I guess all we can is keep in keepin' on, corny as that is. Keep the faith that we can recover. Stay as cheerful and/or optimistic as possible. Reach out to others for comfort when we are down. Try suggestions on the forum which others say have helped them somewhat. Keep what works. Drop that which does not. See at least one good thing everyday, and give thanks. I find this helps me the most, to find something of a miracle in the day I have, in the moment which is all we ever really have. The past is past, the future yet to be. This moment is all that is real.

Yes, I truly think Western medicine is wrong in it insistence of proof for everything. Why I like Eastern herbal medicine which sees the whole person and tries to rebalance the body so it may fight off what is wrong. A slower process certainly. I hope that someday the" cracked medical community" will see the errors of its ways. Still I am not counting on it, so go my way.

[ladycolorado]

deleted to preferential standards and being censored for defending my credibility *

[pat]

What you all need to do in US is have a mass demonstration at the WH or wherever the top dogs congregate.\Get the banners out and tell em if its a delusion they won't mind you throwing it all over them.
People used to have demos in England .That was before this government treated the water with apathetic tea and turned the population into wimps.However I only know of 13 in UK so if we went on a demo they would prob think we were waiting for a bus.Then again me and hilly could take the chicks that would swell it .
So have a demo you lot and when you've had it any bodies fancy a trip over here to swell our meagre ranks will be welcome.We have first class accomodation in the hen houses and loads of room.

[pez1103]

The MRF is criticized no matter what they do -- they put out theories, they are criticized; they don't put out theories, they are criticized. Meanwhile, if you read the financials, you would see that the organization has very little funding for any research. People are sitting back waiting for this to be solved, but it cannot be solved without money.

[carla]

Well I agree with you Evan.I am sick and tired of all of them .
LC what makes you such an expert.You payed for a few appointments with the guy. I m sure you never discussed the politics of it all.
Is no one allowed to disagree with you at all. You put your personal veiws all over the board and if any one disagrees you jump down their throat.
WE cant sit around waiting for a cure this forever.My baby son has it, hes so perfect and clever and how long will it be before the damage it does to him is untreatable. I ve been waiting for 4 years now and they have done nothing ,esp. the useless CDC .We have every right to vent about them. We're all scared of whats going to happen next.
Its clear to me IV drips full of drugs do not cure everyone
carla x

[ladycolorado]

deleted due to preferential standards and being censored for trying to defend my credibility*

[tcmgpt13]

I do not find Carla's post bitter, but it does say something important. Is is time for us to stop and think before posting. It is never polite to post in all capitals on the internet as it is the equivalent of yelling in someone's face. Of course you do not have to agree with EvDownJr, but when you do disagree doing so in a respectful manner is so much more pleasing and less likely to ruffle feathers. It is disrespect of others which is dividing this forum, not the fact that Carla has confronted you with it this time. She is doing what a moderator does, pointing out that lately you seem to get quite angry when someone does not agree with your posts. We all are coming from different viewpoints and sets of emotions. I do not think your post makes EvDownJr feel better about her situation, which sounds as if it might be worsening and not getting better. You may be doing better, but not everyone is nor do they all have the option of going to doctors who have any kind of a protocol for Morgellons or even any clue as to what Morgellons is (assuming they will believe in it at all). Many are running out of money and they are very scared (rightfully so IMHO). I think we all need to think more about where the other person is before getting into emotional postings.

[hilly]

Excellent post TCM It's so very hard for all of us. We are all sick with something noone knows or in many cases will do anything about and so far nowhere near a cure. It's very frightening and makes us all scared, depressed and worn down and justifiably a bit quick sometimes to react, not always in the best way. I think it's amazing that on the whole everyone manages to keep their sence of humour and to be so supportive to the ones amongst us that are going thro' the hardest time...And that of course applies to each one of us. We all have a breaking point and need each other to keep going. We will win, and I hope and pray it will be soon. Hilly

[ladycolorado]

all i am saying is the mrf does care but grossly underfunded, and watched and picked apart by the good folks at morgellonswatch. sometimes mrf has to tone down language too to try to get disease recognizeed. they also do support natural and alternative care too. i did have lengthly chats with dr. harvey the first visit 3 hours too, told to ask any questions wish, rest exam. the phone consultations were extra long at my own cost. yes asked alot about the politics, each day being sick tiring. as far as caps was to distinguish from quote when gets buried. i shall say without mrf far fewer doctors rare enough as it is. i do not like my credibility questioned. i have no motive or agenda just that others inprove and realize not alone or crazy, and many tools at our disposal to fight disease. when i get sensored for caps when others curse in here just a bit silly. was to stand out from quote so read correctly tcm. the social chat is great carla but "weird" how the individuals either attack me on a post, the shoutbox, or in a "story" . these few also like the theory threads and post little on actually getting well. so if members can vent, i am simple member i can vent too. as far as the mrf, yes bad enough morgellons watch bashes them (MRF) then have our own members bash them too. i do not worry so much about the mrf looking, but the "unfriendly" guests more so. question? if caps so bad , does anybody wonder why bubba is not in here? look back at her posts, and see some of the cussing and insults she gets. ranking, administrator, global moderator, moderator. as moderators, this is a pure travesty, that this outright abuse is left to stand in posts. (LC).