good news ffc and a mild rant

Discussion in 'Fibromyalgia Main Forum' started by providerwatcher, Jul 10, 2008.

  1. providerwatcher

    providerwatcher New Member

    After doing some internet searching, it amazes me that with the prevalence of FM and CFS, that there are not that many providers who are specialists in them by now. The list does not seem to be growing, either. One would expect that once you take out those who purport to be "specialists or experts", that there are VERY few who know what they are doing. I guess that is why there is so much frustration. There doesn't seem to be anyone beyond FFC and a few doctors here and there who have made the effort, even recently. That is shocking to me. At least pharmaceutical and homeopathic remedies continue to be produced.

    Just checked FFC website and they are making their centers capable of filling prescriptions on site, which seems to be a real convenience, especially with gas prices. And their doctor turnover has stablized. I know that clearly they cost money, it looks like all providers do. FM and CFS are so unusual in terms of treatment options, I think that perhaps we should be critical not of the existing providers who are trying, as much as those who aren't.

    Where are the leading institutions in the U.S.? The Mayo, the Cleveland Clinics, the Harvards, the federal governments' NIDA? That is the most shocking to me, that these places have essentially relegated FM and CFS to an almost invisible status, as if its not real and underserving of their hundreds of millions of dollars in funds for research and treatment prototypes.

    This is one of the most under-recognized and under treated set of illnesses in the country, and it just doesn't seem to be getting better. Am I missing something?




  2. kbak

    kbak Member

    when it comes to CFS & CFID it's known in the medical community as a career killer. Research dollars are very hard to come by and the AIDS researchers see this as a competitor for their research dollars. It's all about medical politics. I think at some point it might change. Hopefully sooner rather than later!

    Take care,
    kbak
  3. marti_zavala

    marti_zavala Member

    Dr. James Baraniuk from Georgetown University (right there in Wash. D.C.) mentioned this in an interview in 2005.

    He has spent most of his career during research through NIH and when he began to focus on ME/CFIDS - he talks about people walking away from him and rolling their eyes.

    His statement was something like - another wacky doctor for those wacky patients, or something to that effect.

    So if he is getting that type of flak, imagine a little general practioner.

    But since 2005/2006 when some studies really came shining through with genetic polymorphisms and some immune studies, it is starting to change. VERY SLOWLY but it will change. A few studies need to be completed and a biomarker needs to be found (which also lists the subtypes) and boom, we will be a real illness.

    My opinion,
    Marti
  4. msbsgblue

    msbsgblue Member

    What you say about them giving meds on the spot is true. My good friend went to one BUT prices are rediculous. $1500. first visit and $500 to $800. after that. They even wanted almost $300. to write a letter to disability for her.

    Not to mention that they made her sicker then a dog in the months she went and she kept getting sicker and sicker until she lost so much weight that she was near to bones before she finally quit going.

    I wouldn't go to one myself.
  5. munch1958

    munch1958 Member

    I went to the Detroit FFC. I would recommend it as a place to go to get the lab testing done. This will uncover your specific issues. Once you have your results, then you can decide on treatment.

    I had a very tough time getting any doctor to run the lab work that all FFCs do on a routine basis. It's about $10-$12K worth which is all billed to your insurance or Medicare.

    I was able to take copies of my labs documenting adult growth hormone deficiency, adrenal insufficiency and hypothyroidism to a conventional endocrinologist at a major teaching hospital.

    Where they turned me away before they now paid attention because I had labs over a 9 month time frame documenting my diagnoses. Once you uncover what your issues are you can then get treatment. All of my results and treatments are in my profile.
  6. marti_zavala

    marti_zavala Member

    Is it true that insurance was billed - what was your out of pocket?

    I have only heard this once before and I would go for the testing if insurance was billed.

    But it seems most of the branches do not file insurance.

    Would love to know because there is still a lot of testing I would like to get.

    Marti
  7. providerwatcher

    providerwatcher New Member

    Interesting thoughts, and I think some encouragement on the horizon regarding getting FM and CFS the funding and attention it needs at the federal level. I am still mystified as to the Mayo's of the world. You would think that many sufferers end up there, because they are bounced around locally with no improvement, so if all else fails, go to Mayo. Its like that for so many other neurological, neuromuscular, chronic pain type stuff. I know Mayo acknowledges FM exists, but wonder what their treatment protocols are. Probably not much. They need to get serious, along with the others.

  8. kbak

    kbak Member

    I went to a Mayo seminar for people with fibro and arthritis. The doc that headed it said that fibro was their no. 1 pain problem way out numbering back pain, which use to be the no. 1 pain problem.

    Their main treatment is antidepressants. They really don't want to use very much pain medication. I asked if they were doing any research on fibro and they said no. Strange for it being their no. 1 pain problem.

    The doc said that many docs in their big organization don't think fibro is a legit illness. That's why I think you don't get much outa Mayo's.

    kbak
  9. dtj

    dtj New Member

    "Just checked FFC website and they are making their centers capable of filling prescriptions on site"


    They have been doing this for years, the brother of one of the co-founders of the FFC is a pharmacist and has made on-site meds. and supplements a huge money maker for the operation.
  10. PVLady

    PVLady New Member

    Talking about labwork at FFC or anywhere. Just a warning, before having all the labwork make sure your insurance will pay.

    I had my regular doctor order a number of the same tests the FFC orders, also for Epstein Barr Virus - (I also went to FFC and had all the labwork a few years ago).

    I have Blue Cross PPO and they came back refusing to pay. They had their own doctor review it and based on his opinion, I guess he felt I did not need the tests. This is not true as my Epstein Barr Virus result was 8,000 with a norm. of below 90.

    Anyway, the bill was over $3,500! I was freaked out because if I did not pay the lab they would turn it to collection and ruin my credit.

    Luckily the lab must have known I was not going to pay $3,500 so they sent another bill discounting the charge to $411.

    I am not saying everyone's insurance won't pay but I had a shocking experience.

  11. providerwatcher

    providerwatcher New Member

    kbak, WOW. So the Mayo's number one pain issues are with FM and they are doing no research because some doctors there don't believe in FM? Is that it?????

    What an incredibly illogical and irrational position to take. Its so crazy, yet I tend to believe it. What do these doctors think it is, then? Swarms of patients with FM symptoms coming in and they are calling it, what, exactly? Neurosis? A pain syndrome? I just don't get it.

    Imagine the research dollars not being spent on FM/CFS, but otherwise spent on things like toenail fungus, eczema, etc. Its beyond me.

    For the FFC postings, I think its a good idea to have them check for insurance coverage of your meds first. Most insurances should pay. As others have said on here, their lab testing seems better than anyone elses. For their prescriptions at the clinics, I read the web site as them offering basically the same thing that any other pharmacy would offer, which would make it easy on the patients to not have to go to two differnt places. BUt, I may be wrong. Anyway, my main point is that our health care system is broken in so many ways, especially when so few providers of specialized knowledge and treatment like FFC, exist. I have changed my view and energy toward that, versus critizing so much those who are trying to treat these problems.

    There are SO many, in fact, most everyone on this board has been through the health care gauntlet for treatment, stepping into one gap after another. Until major institutions step in, the general medical communnity will not change, or will the insurance companies. I don't know what to do about it, but just ranting the obvious I guess.
  12. CKater

    CKater New Member

    Ironically I phoned the Mayo Clinic in Rochester when I was first diagnosed by a local, and very BAD rheumatologist who told me "the Mayo Clinic doesn't even treat patients with FM". I thought your an A-hole, and out of your mind so I called them. They told me they treat patients everyday with chronic pain and fibromyalgia, but do not accept new patients as they are simply overwhelmed with these patients. I don't know what their protocol for treatment is, but the above comments are indeed shocking. I personally go to the Marshfield Clinic in Wisconsin, and see a rheumy who has written several papers on FM, and even he still seems somewhat puzzled by the disease and unsure of the "right method of treatment", because as he himself says - AIDS is taking all of the research dollars and thats very sad.
  13. findmind

    findmind New Member

    Yes, you are right, we should be grateful for the few places outside the main researchers who do care about us..

    However, I don't guess you have read "Osler's Web" by Hilary Johnson?
    If you had, you certainly would not be asking "where are all the leading institutions.."

    One so-called "leading institution", the CDC, has made sure the doctors of the U.S. believe CFIDS/ME is just plain ole' fatigue that everyone experiences once in a while, but we who remain sick are getting a benefit out of it in some way.

    They have watered down the definition, now excluding any neurologic symptoms, so of course it is not MY Myalgic Encephalomyeloitis! Idiots..or are they?

    They are getting what they want: a complete political cover-up of M.E.

    findmind
  14. providerwatcher

    providerwatcher New Member

    Well, at least one Mayo physician is on the case. I only perused Osler's Web at a bookstore 6 months ago. The one thing about it was that I think it was over 10 years old, and so I was sort of expecting by now that there would be significant progress, due to the prevalance.

    Anyway, I'm so disappointed in the mainstream medical complex's dismissal of these illnesses. I just can't think of a precedent.
  15. findmind

    findmind New Member

    Did you read the book? If you can, I highly recommend it to anyone with CFIDS/ME.

    It will help you understand the political and scientific reasons for the cover-up of M.E. and I believe no person who contracts this terrible illness should skip reading it.

    It allows one to have the whole political spectrum viewpoint, and explains why we do not have any validation.

    I hope you read it closely. It has about 4 "themes" to follow, and I used a different colored highlighter to follow them from chapter to chapter. The time and energy is well worth it.

    Hilary Johnson has also put out a new edition that is very up to date. Maybe you could find one of those on Amazon, used, and cheap.

    Best to you,
    findmind