Every CFS patient with federally sponsored health insurance has experienced firsthand that it is very poor coverage for anything but the most mainstream care. However, now all of a sudden, some expect the WPI to provide boutique care for what Medicaid will pay. And cure everybody of an incurable disease. On the first visit.
Let’s see what mainstream medicine has to offer. Here are the Mayo Clinic guidelines for CFS: link. That’s what Medicare will pay for, and they say right there that they think IVIG and antivirals don’t work, so that finishes the discussion of expensive treatments. There were comments yesterday that there are a few CFS doctors that accept Medicare. If that’s true, then what’s the problem? My mail indicates that the best known CFS/Lyme doctors do not accept Medicare, let alone Medicaid, or they have other ways of generating income. But if they do take it, then there’s less of a problem if we can’t. And we can’t for now – not won’t or don’t want to.
It is impossible to budget without knowing in advance the percentage of federally insured patients that will want to be seen, but it is likely to be high. Medicare will pay if you need a million dollars worth of ICU care, but they won’t pay a few hundred dollars for you to be seen by a doctor that has the time to listen and think about a complex history. I have no interest in discussing the state of the health care system. We all know up close and personal how bad it’s gotten. It would be better if doctors worked for love instead of money like Mother Theresa, but apparently there aren’t many that do, or the clinic would already be up and running.
I’m certainly not going to touch whether doctors are worth what they expect to be paid or not. I do think everybody needs to remember that whatever a doctor’s fees, he or she doesn’t take it all home. There are many expenses involved in running a medical practice, including but not limited to malpractice and other insurance, rent or maintenance on the space, salaries, supplies, accounting and legal fees.
As for whether the WPI should have a clinic that treats a volume of patients, or just be doing a few clinical trials, that decision has already been made. Annette Whittemore’s vision of translational medicine included treating patients from the beginning. Bench to bedside to bench. The clinic exists. It is a very large space, capable of seeing a large volume of patients. There are many patients asking to be seen. In an amazing display of synchronicity, all of my professional and many personal experiences are a piece of what’s needed to organize it. Although there are many ways in which I am the right man for the job, I’m also sick and that is far from ideal, but no CFS/neuro-immune disease knowledgeable doctors have stepped up to the plate. So it seems to be my fate. I appreciate all the support from the community that I am receiving. I will do my best not to disappoint.
What are we going to offer that’s different? Medical decision making will be influenced by continuous interaction with the research lab and physicians around the world. We’re going to keep track of a large number of patients, so there is an opportunity to contribute to the greater good of the community. We are going to have doctors who are not wedded to their particular black box protocol and who are willing to consider all therapeutic options for each individual they care for, whichever neuro-immune disease cohort you fall into. We can’t offer a magic bullet that doesn’t exist, but we will be looking for one, and if we find it, you won’t have to come to Reno to hear about it. We’re going to offer quality care; that’s not unique, but there’s precious little of it to go around. We’re going to treat some patients for free as soon as we can. That unfortunately is pretty much unheard of.
There will be no solicitation of any kind. There will be no products pushed or sold. Nobody who has any questions about our motives need come. This is a unique endeavor. No one has helped us before, so we are going to help ourselves. Of course I hope that the ME/CFS community is behind us. I have no illusions about being able to be all things to all people. The harsh realities of practicing medicine preclude that, but we will do our best to serve our patients and the larger community as well.
>I understand all that is said in your "Money" post and in this article, and it makes sense…my question is this: I have medicaid, and my pcp has given me every test, I've requested and even prescribed acyclovir and LDN, she clearly wants to help, but is not knowledgeable enuf to do so..Will it be possible for your doctors to work with other doctors, like mine, who are very interested in learing about treatments?…you talk about "interfacing with 'local' doctors in the "Money" article, but what about long distance doctors? Rather than starting 'sattelite' facilities which, at this point, is obviously not an option financially..
Thank you,
Julie Houska
>Yes. I am already speaking to many doctors. We are assembling a Physician Working Group to share clinical ideas going forward. I invite your doctor to contact me:
jdeckoffjones@gmail.com
Jamie
>Thank you Jamie for being a leader.
I would like to Say that I know that WPI is doing the best with what they have. At this time It is not up to WPI to rescue everyone though they try hard
Patients can put pressure on their congressman/MP to fund ME/CFS research, education to physicians and treatments.
>Dear dr. Deckoff,
I think you are doing a wonderful and great job. We should not forget where we came from and definitely not forget what exciting times are lying ahead of us.
The patients who can afford to come to your clinic will set the thing in motion. I have no doubt that other people will benefit these patients visits as well.
I do understand the reactions of my fellow sufferers, but coming from a country where physicians are fined and suspended for treating the disease with medication other then antidepressants, I'm thrilled with the progress we can make in the future.
Love,
Esther
>These statements of the past few days of Dr. Deckoff-Jones are elaborations of the WPI mission statement regarding research and treatment. These articulate and balanced statements are welcome news to this reader.
The WPI is interested in one thing: cracking this illness. They have no interest in furthering their “careers” – or in building out a vitae. Instead, they are hurtling forward, researching the mechanisms of this illness, defining the parameters of the disease and searching for treatments. No one else in the world operates in this way. No one else is as focused.
The people involved with the WPI would like nothing better than to solve this illness and get back to their lives. Each of them had a former life prior to being dragged into the complexities of this illness. They currently are invested only in solving this problem. In this way they are unique. In this way, they are different from others in the field. They do not have directors who earn $175,000, and make no dent in the illness. Instead the WPI is going to “move this illness”. This is starting now, with this treatment center – the first and only one in the world.
Dr. Deckoff-Jones is one of these unique people. Additionally she is one of a very few “XMRV survivors” (or partial survivors). She could very well go back to her former life, but, instead, she feels “a calling”. This calling of this unique and visionary doctor will benefit us all.
We have to think of ways to help Dr. Deckoff-Jones at this important time. Those of us who know younger doctors who might be interested in working in this clinic need to put forth our suggestions. Those of us who know doctors or researchers who are inclined towards the infectious nature of this illness need to forge connections with the WPI. Those of us who have access to people who give to worthy causes, have to recruit family and friends to give to the WPI.
Patients and advocates want to know what they can do to help. Now is the time to stop asking and start doing. Each of us have small ways in which we can contribute. These are exciting times.
>Please take care of yourself. We need you for the long run. I hope you have good help. And we all need to do what we can to help the WPI do what they can.
>Thank you, Dr. Deckoff-Jones, for the excellent update on the opening of WPI's clinic and for your hard work and sincere dedication. As a disease, ME/CFS could be the "poster child" of Translational Medicine, we so urgently need this new approach which WPI has readily embraced. NIH Director, Dr. Collins, is proposing a new Institute dedicated to TM which he hopes to open by yearend 2011 (Science, 10 Dec 2010,p. 1462, "A Governement Niche for Translational Medicine and Drug Development").
The article mentions grants averaging about $9 million that support clinical research at academic medical centers. Would it be possible for WPI to investigate these grants and Dr. Collins TM proposal in terms of getting financial support?
>Sorry to be a gadfly. I hope everything goes well for those involved and the patients who choose to come.
The reality is, it's a cash business in order to generate a large income flow some of which will divert to research.
Otherwise, insurance, both medicare and regular insurance, might be viable. Whether or not medicare pays for IVIG I don't know, but I do know lyme patients who have gotten IVIG covered for years, after demonstrating small fiber neuropathy and tilt table test problems at a competent neurologist. Since lyme/CFS overlap, this is useful to mention. And certainly the patients I know taking expensive combinations of antivirals, antifungals, antibiotics, and supplements like Deplin or B12 shots etc, are finding their insurance covers much (the ones that I know).
In addition, since research will actively be going on it is vital and imperative to be truly transparent about what those projects are. They can influence the doctors recommending tests, since some of those tests might be interesting to the research arm of WPI. That's why I asked for a more specific list of testing, treatment, and research imperatives over the next year. A patient should be informed so they can make a decision about where to spend their money, rather than letting the doctor make it unilaterally. It's going to be almost impossible for the doctors to separate out the clinical and the research, if the two are "translational" and always going back and forth. And since it has been made clear the patients are funding the research with their cash…
There *is* a distinction to be made between working for nothing (love) and earning a lot (money) without having to deal with the admittedly ridiculous bloated time consuming insurance system. I know most doctors hate insurance-based medicine, but most do accomodate it because most patients can't afford care otherwise.
Hopefully something new will come out of this endeavor, and patients who wish to be treated will make progress.
>It's not a business, it's a non-profit. Trying to generate income from the medical care for the research takes it out of non-profit idea. Either the wings are separate, or it should be a two way street with donations providing start up funds. Having a clinic gives WPI more ways to attract donations, if they are shared. Breaking even is a good goal for a clinic.
Maybe there is a way to cover phlebotomy services thru medicaid or HHS. I like the skype idea, with web seminar podcasts for free on each treatment area, or distance consulting on medical records (for a few hour fee) while you generate some donated funding for the first clinic for XMRV, clinical trials, and experience that will accommodate insurance.
If you have GcMaf or peptide T or other things not available elsewhere, we know those are not covered and you could charge a reasonable fee.
Is it for ARVs? Will there be a relationship with Isentress for low income patients? I agree with Jill, it comes down to the treatments available, since the doctors still don't have the answers. Kathy
>Many of us hoped things would be a lot further along by now. 'Lot of pain on these pages as the clock ticks. Lot of cynicism and fickledom too that won't slow it down or speed it up. I'm thankful not to be on medicare, but the next "specialist" might have me dipping into retirement, insurance or not. It still amazes me how quickly people like Klimas and the Whittemores go from hero to zero. Human nature.
No bucks, no Buck Rogers. No consistent path to improvement yet. Partly it's the reality imposed by an immoral pharmaceutical and insurance industry; much more is due to those in our health bureaucracies putting money and careers first, and probably some grander designs. Gadflies, write your government, as largely therein are those, whatever their motives, putting the screws on progress and keeping us sick.
Thank you, Dr. Jamie, for your honesty. You can't and won't please everyone, but most will take an honest "no" any day. On to work.
>Warbler, there has been a tremendous amount of research on XMRV begun or completed, in the last year. I have no complaints. It'll take many years, imo, to determine how the virus infects, if it afflicts, what it does when latent, how it goes into latency, how causative it is, whether it is upregulated by another pathogen selectively, etc. That would be impossible to do faster.
People are unrealistic about how fast science can figure things out. I've thought all along that people complaining the government is uniformly burying XMRV are not realistic. Good research is going on at this moment. You put one of the lead virus hunters in the world (Ian Lipkin) to head a good team to determine why there are conflicting results in testing–and yet people are still complaining and saying it's being buried.
As to the government making us ill, I track the rise of illnesses like these to pollution, pesticides, chemicals in everything we eat and drink, too aggressive a vaccine schedule, tons of chemicals in our homes built with formaldehyde, solvents, benzenes, glues, etc. For instance, colony collapse disorder is likely occurring because new pesticides hobble the immune system of bees, rendering them vulnerable to viruses or fungi they could have resisted formerly. The same is true of bats, dying of fungal disease. It's very clear there that people, including children, are getting sicker and sicker. There is way too much disease of every kind, from autism to juvenile diabetes to ADHD, etc. People think it's normal to have kids with constant ear infections, strep throats, and so on. The high levels of antidepressant medications and sleeping pills the population is on are not normal either. So I focus my form of activism, when I can, on the fact that we are killing ourselves and our habitat with chemicals. The organic food industry just caved in and said go ahead to Monsanto's roundup-resistant alfalfa, which will contaminate all alfalfa genetically. Roundup is toxic. I'm more concerned with the cause of the skyrocketing disorders, and I personally don't put it down to a possibly novel virus.
We should take a lesson from the bees. And if someone says, well that's not relevant, I'm sick right now and need drugs, maybe it is relevant. I know a few people who have recovered from bedridden by avoiding toxins, which required a radical change in lifestyle, however.
>Dr Jamie, the ME/CFS community IS behind you, even as those of us who have been impoverished by the disability of ME/CFS for decades are disappointed that we won't be able to take part in these exciting developments.
It is terribly depressing to know that there is treatment available now, but it is too late for me.
Even so, I am happy that younger sufferers may not have to suffer the disease, the disability and the impoverishment as I have.
Please take good care of yourself.
>Let's stand behind a reasoning, human being, integratively-oriented, sufferer, carer, open, intelligent, knowledgeable, CCC+ aware, Lyme-aware, neuroimmune-aware, multisystem-aware, denigration-aware, plain-talking, science-literate, sufferer-oriented, big-picture-conscious, right-thing-oriented, constraints-acknowledging, reality-enabled, GETS IT, open about her medical history, talented, physician, blogger, experienced medical director.
Jamie and the WPI have (and always have had) my confidence without reservation.
I think that she has explained things well.
Please take care of your health. I look forward to the things you will do, whether or not it is possible for me to go (as a 4-decades-long sufferer, I very much hope that it is possible).
Samuel Wales
>Just to be clear, I think, there are no treatments that are going to be given at the WPI that are new, YET. They are not keeping secrets about things that they will be able to do or give that others aren't. And, they are saying that as soon as new treatments do become available, that they will educate your doctor to give said treatment. Also, they are not denying anyone use of their insurance. I'm sure they will issue a super bill that can be submitted.
It is interesting that Dr. Klimas had to start her new clinic the same way. You can't pay a staff if you don't have money coming in right away. I believe that in her case, it is set up so that most people will get back most of what they have to pay out by submitting to their insurance.
I think that we all have to accept that there is nothing more that can be done right now. If there were, they would be doing it. I know that the WPI is totally, 100% interested in helping us all. I also know that Dr. Klimas has dedicated her life to helping us. These doctors do not get paid for their time presenting at conferences or serving on committees, yet they do. We are desperate for treatment. Let's not take out our desperation and frustration on the very people trying their best to help us.
Thank you, Dr. Jamie for every thing, every little thing you do in our name. Thank you from the bottom of my heart.
>Something that has not been mentioned in this talk about money is the fact that the federal government becomes intimately involved in any medical practice which accepts medicare, and, to some extent, insurance assignment. Personally, I prefer that the new WPI Neuro-Immune Disease clinic remain autonomous, at least until it is well established. I have seen what the federal government, in the form of the CDC, has done for the treatment of M.E. Surely, we don't need any more of that mistreatment.
Patricia Carter
>Wonderful start to the clinic Dr. Deckoff – thanks for being so transparent and open with the community.
>I think it is a wonderful start, and I'm very excited about it, in spite of the fact that I probably won't be able to afford to go anytime soon.
The detractors of this clinic, and much of what's going on in the research world, are uninformed about how medical research and new treatments move forward. This is all moving at lightning speed, and those negative studies we all love to hate are actually a necessary step along the way and will help lead to treatments that can be considered effective and reliable by even the most conservative in the medical (and insurance) community.
If all the studies were positive then doctors would not feel this theory had been adequately tested. Negative studies prove that there are accurate (and inaccurate) methods. The conclusions are made stronger.
And we need this clinic strong too, if it is to last long enough to help take the research to the point where treatment can be widely accepted as reliable. It has to be self-supporting, and even help support the research. Yes, this means those who can afford it are helping to finance research that should be financed by the government. That is not the fault of the clinic, or the WPI. In fact, they are finding a way to get the research done. Hallelujah. (And if I could afford it I would be happy to be paying that extra bit, knowing the good it will do.)
Thanks to them, I know that I will get help when reliable help is available. This is a huge step forward. I am super happy about it.
In gratitude,
Laura
>Jill, if someone has a virus or retrovirus, no amount of "clean living" is going to kill the virus. I strive for "clean living" but I'm extremely sick anyway. We need medical treatment *in addition to* healthier lifestyles.
A healthier lifestyle may reduce the need and/or amount of medical treatment require to regain optimal health, but it does not eliminate the need for such treatment, IMHO. I don't see how simply eliminating all toxins from our environment is going to cure ME/CFS.
>WPI = Institute for Neuro-Immune Disease
Is there facility to ensure ME/CFS isn’t swamped out of the picture by a flood of cashed-up, highly functional and motivated parents of children with neuro-immune disorders, such as autism? All conditions are equally in need of medical assistance, but it seems very likely that there will be competitive pressure for treatment/evaluation at WPI clinic. Quite understandably, sufferers tend to think their particular condition is more neglected/important (than other conditions). Parents of young children, torn by the emotional toll of helplessly watching a young child suffer/flounder and having their dreams of a “perfect family” shattered, are very motivated and active.
In contrast, ME/CFS sufferers tend to be broke, exhausted and alone (no one advocating or helping). Some of those who do have access to funds tend to try anything and everything, witness on-line chatter following ‘Patient X’ story of 2009.
Possibly these same ME/CFSers will attend WPI clinic (they’re not yet, quite, broke). How is the clinic going to convince these people to stick to one treatment-plan? How will the clinic evaluate its treatment’s outcome if the patient doesn’t adhere to a single treatment?
WPI had an excellent clinician in Dr Peterson (they even named the clinic after him), why did he leave? He cares about his patients and everyone with ME/CFS; with this goodness, whatever the reason/s for his departure, he wouldn’t criticise WPI (whether it deserves criticism or not).
Jamie:
I concur with others who commend your forthrightness and personal insight into both sides of this equation, the physician/clinic and the patient.
Quote from your January 28 post (Money), “PAs tend to be more compassionate and detail oriented than doctors”. Why are doctors soooo bad at attention to detail?
Maybe you could recruit Dr Atul Gawande in an advisory role while setting up protocols for the clinic.
I suspect that you are familiar with his book from 2007, but for the benefit of others here’s some more info:
In his book “Better: A Surgeons Notes on Performance” Dr Atul Gawande nominates diligence, attention to detail, constant surveillance and bedside ingenuity as attributes displayed by those who achieve superior outcomes in medicine.
A transcript and podcast of his address at the Commonwealth Club in San Francisco: http://www.abc.net.au/rn/backgroundbriefing/stories/2007/1936742.htm
A 16-minute interview with Dr Gawande; at the end of the interview he comments on evidence-based medicine (download is of the full program; Atul Gawande interview is the first item on the program).
http://www.abc.net.au/rn/lifematters/stories/2008/2114419.htm
A review of Dr Gawande’s book in The Journal of Clinical Investigation: http://www.jci.org/articles/view/32520
>SickSince1979:
Heard of Erik Johnson aka Mold Warrior?
The trouble with ME/CFS is that a bunch of people have been given one name for their condition, when in fact good attention to detail almost certainly will reveal variable causes and variable predominant symptoms. I’ve got the label (CFS) but I very much doubt that I have a virus (or bacterial infection, or mitochondrial dysfunction, or dicky heart, or sensitivity to mould, or immune dysfunction, or physically unfit [I’m remarkably fit when I have energy, I suspect many ‘normal’ people are less fit than me], or ….).
I am very interested to note that Dr Bill Cassimatis (Queensland, Australia) has noted variability of symptoms according to phase of menstrual cycle in some of his female patients (see 'Clinical overview' section of report on Day Two: Australian CFS Science Conference By Rosamund Vallings http://forums.aboutmecfs.org/content.php?310-Day-Two&s=7c4e20e6dbcd951f60e2a3402b2aed0c
This is one of the most predominant features of my CFS. I’ve tried supplementing hormones with no beneficial effect, but there is definitely something about very high natural oestrogen that my system loves (I’m virtually ‘normal’ for the few days in a cycle when this occurs, pre ovulation). But why? Oestrogen enhances glucose entry into brain, acts as MAOI, the list goes on ……
>Jayne, I've heard of Erik Johnson, aka Mold Warrior, but know no factual details about him or his experience. With my brain fog there is only so much I can keep track of.
I'm not against non-toxic living. I just don't think it's a good idea for people with viruses (me among them) to expect detoxing, living in a clean environment and taking lots of supplements is going to *cure* the viral (or retroviral) infection.
>I sincerely don't mean this as a cruel comment, but perhaps as you read more about Erik, and others with other types of environmental toxins in their systems, you'll learn how these toxins have and can impair immune function, and then one day you can say I AM NO LONGER SICK SINCE 1979.
We are surrounded by viruses, retroviruses, and bacteria. Most people recover from these same bugs, but we don't.
Isn't it just possible, that our bodies might be burdened by chemicals, toxins, heavy metals or mold, that have messed up liver detoxification systems (as in autism), disrupted the normal immune response, so that we won't get well until we deal with these other problems?
SickSince1979: You may have been living in a clean environment for quite a few years, but if your liver detoxification pathways are impaired, your body might still be fighting the toxins you picked up 30+ years ago.
Just something to consider.
>Dr. Deckoff-Jones,
This sounds absolutely wonderful! Thanks for doing this. imo, you should start with fully paying patients until you are sure you are going to be financially healthy. no use trying to provide too much no-cost or low cost treatment at first and then going out of business. I want to see as many clinicians and researchers as possible trained by and working for/with WPI and this can't happen unless you are pulling in as much cash flow as possible. WPI's research is what keeps many of us getting up in the morning and i want to see it funded as much as possible.
anyway, THANK YOU so much for your present, past and future work to help pwME!!!
I fully realize, as you said, you and WPI can't be all things to all people, but FWIW- I'd really love to see you referring to the disease as ME. imo, this is a no-cost way to really help ME patients, clinicians and researchers.
>Sick since 1979, we have since the beginning of time lived with numerous viruses, and other pathogens and microbes, and generally it is natural to *live in harmony* with them. It is not natural to be chronically ill with them simmering away in odd neuroendocrine immune illnesses that hobble but don't kill (it is also natural, if you look at history, for a microbe to occasionally sweep through a population, kill a lot of people, and slowly become less virulent and/or leave those immune to repopulate).
Epstein Barr is a case in point. Almost everybody is infected. Almost everybody tolerates it well. A small portion get cancers related to it. And it is linked possibly to other health problems. It's very interesting, for sure. But generally, we live in harmony with it.
So to assume you have a virus or retrovirus that must be killed, is not to understand nature generally, most of the time, imo, or anyway, my point that I'd rather focus on the way we are poisoning ourselves and our habitat, as a better way to help us all get healthier.
Even with HIV, the initial alarming viewpoint was it would kill, period. There was also a lot of uncertainty about antibody tests, and I still remember front page news stories suggesting latency could be up to ten years to turn positive!
As it turns out, there are all kinds of permutations to HIV infection. Some are immune (1% of Caucasians lack the receptor needed for HIV to get going), others can maintain wellness for decades because of genetic variation, and there are different strains as well.
And I'm not sure HIV is a good model here, anyway.
Unfortunately, it'll take many years to tease out the intricacies of XMRV. It just will. Nature is complex. We have amazing tools, but it still takes quite a bit of time.
I think the most important bit of information I've gleaned so far is the ARVs have generally had a poor response. Jamie & Ali are perhaps a few of the best responders. Occam's razor would say, maybe XMRV is not causative, therefore. (Although some people say, it replicates slowly, and is integrated in the DNA and will just cause problems until chemically snipped out. Well, I haven't seen enough evidence it replicates slowly, and Jamie & Ali's immediate flares suggest otherwise. And I'm not convinced that it just sits there spewing out bad stuff while in latency. Maybe that's true, but I'll need to see more research before I believe that).
>Justin, please, you've got to turn the record over. Yes, CFS is a stupid name for a complex, complicated disease, but ME…well, I can just hear the ridicule that might be even worse:
"You've got ME? No you don't, I've got ME."
There's got to be a better name that's not so narrow, and yet not so broad and insulting as CFS.
But it's not me.
>Jamie:
I concur with others who commend your forthrightness and personal insight into both sides of this equation, i.e. the physician/clinic and the patient.
In your January 28 post you write, “PAs tend to be more compassionate and detail oriented than doctors”. Why are doctors soooo bad at attention to detail?
Maybe you could recruit Dr Atul Gawande in an advisory role while setting up protocols for the clinic.
Probably you are familiar with his book from 2007, but for the benefit of others here’s some more info:
In his book “Better: A Surgeons Notes on Performance” Dr Atul Gawande nominates diligence, attention to detail, constant surveillance and bedside ingenuity as attributes displayed by those who achieve superior outcomes in medicine.
1. A transcript and podcast of his address at the Commonwealth Club in San Francisco: http://www.abc.net.au/rn/backgroundbriefing/stories/2007/1936742.htm
2. A 16-minute interview with Dr Gawande; at the end of the interview he comments on the limitations of evidence-based medicine, and how an alternative, bedside ingenuity, is important and effective (download is of the full program; Atul Gawande interview is the first item on the program):
http://www.abc.net.au/rn/lifematters/stories/2008/2114419.htm
3. A review of Dr Gawande’s book in The Journal of Clinical Investigation: http://www.jci.org/articles/view/32520
WPI = Institute for Neuro-Immune Disease, i.e. the institute investigates other conditions, not just ME/CFS.
Where will the clinic direct funds for research if it finds itself treating predominantly other neuroimmune disorders, e.g. autism?
If the clinic focuses on treating ME/CFS how will the institute fund its research into other neuroimmune conditions?
>I just emailed Andrea a suggestion regarding private foundation grant writing.
One can hope.
>Disheartening that Mayo is still in the dark ages on ME after all these years since they screwed with Marc Iverson, as told in Osler's Web. That was one of the most painful passages in the book for me to read. This will change, due the efforts of you, WPI and other dedicated physicians. Thank you!
>I WANT TO SAY "THANK YOU" FOR 'STEPPING UP TO THE PLATE' !!!XXXOXOO
I 2ND, THE FIRST COMMENT BY JULIE, ABOUT FINDING A DR TO WORK W/ U GUYS.(YES,I KNOW-NOT EASY :)BUT POSSIBLE !!
AT LEAST IN MY LIFE…WHEN I AM ASKED TO STEP UP TO 'A' PLATE !……THAT IT IS A 'DIVINE MISSION'…..A DIVINE CALL.
WHICH "ALL" OF YOU ARE HUGELY BLESSED.
AS A PAST BUSINESS OWNER, EVERYTHING U SAY,IS SO TRUE (I AM ON MEDICAID,& I TOTALLY TRUST WPI, THAT WHEN THEY CAN FIGUE OUT A WAY FOR
"US W/SMALL POCKETS,BUT I HAVE FAITH,THAT I WILL GET THERE)
OK, LAST IDEA, I LIVE OUTSIDE ASHEVILLE NC.
BEFORE MEDICAID KICKED IN, I WAS GOING TO A
"THREE STREAMS-A CHRISTIAN CLINIC,SERVING ALL OF WESTERN NC………AWESOME ! LOVING, CARING,
FOLKS. I SAW THEM WORK FOR YRS FOR FREE, TO GET THE CLINIC STARTED.
& NO, THERE WAS NO BIBLE THUMPING, NO ONE TRYING TO SAVE U……..JUST GODS PURE LOVE, IN SERVICE. !!
I WAS TREATED W/ NOTHING BUT RESPECT,COMPASSION,& NEVER, WAITED OVER 10 MIN.
BUT "KNOW" YOU ALL ARE GREATLY LOVED & BACKED
100% BY OUR ME/CFS COMMUNITY & WE ARE FOREVER GREATFULL XXX
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if you are interested you can contact me at 1-866-967-8573
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