There’s been a shift in the quality of some of my mail. I am becoming very concerned about being misinterpreted. When I write, I assume that people have read what I’ve written before, but increasingly, that is not always the case. I’ve been writing for eleven months and have covered a good deal of ground. It is becoming clear that if I keep writing, I will have found a way to piss off almost everyone.
When I suggested that antiretrovirals may be useful to prevent transmission, activation or progression of the disease, I meant in the future. Please do not forget that treatment during pregnancy is very effective for preventing HIV from infecting the next generation. Likewise post-exposure prophyllaxis works for HIV. However I was NOT suggesting that prophyllactic use of antiretrovirals is reasonable for XMRV positive people at this time.
I am in favor of treatment. Repeat, I am in favor of treatment. I am against overly aggressive treatment that harms, e.g. indiscriminate prescribing of antibiotics a la ILADS guidelines. I do have the impression that folks who have avoided or not trusted doctors are generally better off, but there are treatments worth considering. I can’t forget that I was functioning as a doctor, and treatment brought me down completely, for six years; I started to improve when I stopped everything except my blood pressure medicine. Ali got four good years from antibiotics, but then was sick for three despite them. A word to the wise. Don’t beat a dead horse. We need to learn from the mistakes of the past.
Here are the current treatment options for consideration, as I see them:
- Antiretovirals: Viread, Isentress, AZT
- Antivirals for activated viruses EBV, CMV, HHV-6 and 7, genital herpes, shingles: Valtrex, Valcyte, Acyclovir, etc.
- Antibiotics for Lyme Disease and other tick-borne diseases: orals, judicious use of IVs, treatment for Babesia
- Anti-inflammatory drugs and supplements for NFkB inhibition (avoiding synthetic steroids when possible): Actos, aspirin, Celebrex, Meriva SR
- Treatment for dysautonomia, POTS, OI: oral hydration, electrolytes, IV saline, Florinef, beta blockers (including Bystolic), midodrine, sublingual Zofran
- Treatment for methylation blocks and glutathione depletion: Deplin, other folic acid derivatives, B12, parenteral glutathione, Meyer’s cocktail, NAC, undenatured whey protein
- Supplements supported by the HIV literature (a work in progress)
- Bioidentical hormone balancing and replacement
- Vitamin D supplementation
- Oxygen
- Nootropics: selegilene, piracetam, vinpocetine, others
- A few relatively harmless things that may be useful for some: Nexavir, LDN, Flexeril, isoprinosine
- Eliminating stressors
- Mind body therapies, especially biofeedback: EEG, heart rate variability and peripheral training
- Dietary change: Specific Carbohydrate Diet, personally tailored elimination diets, probiotics
- Detox and avoidance strategies, especially for MCS, toxic mold exposure, and specific dietary triggers, gluten, cassein, nightshades, sugar
- Herbal treatments: hawthorne, stinging nettle, samento, ginseng, valerian, gingko, milk thistle, rhodiola, others
- Medical marijuana (caution: can exacerbate POTS due to hypotensive effect)
- Symptom based treatments: pain medicine, anti-anxiety medicine, anti-depressants, sleep medication, psychostimulants, etc, etc, etc.
- IVIG?
- GcMAF?
- Ampligen?
I won’t use the dreaded acronyms CBT and GET, but taking the politics out of it, very careful resistance exercise is important. If aerobic exercise is tolerated without PEM, it keeps the disease at bay (patient reports). It is possible to exercise even supine. And, though my own experience with psychiatrists has been dismal due to disbelief and misunderstanding, a good therapist can be a godsend.
Personally, I’m not interested in Rituxan, Vistide, Mitomycin C, or stem cells out of the country. Even stem cell proponents are now saying that repeated infusions are necessary. It seems to me that if placental stem cells are used, without control of the underlying retroviral infection, they will become infected, and if autologous cells are used, they are already infected. Also how are the donors screened, given that blood products are particularly unappealing at the moment? I have heard from a number of people who have pursued this with no impact on their illness.
The reactions to Ali’s post were all over the place. Please know, she is not without medical advice;). She is an extremely informed patient, familiar with conventional and alternative options. For now, she is trying dietary interventions, mind-body therapies, occasional alprazolam for rescue, and tincture of time. She tried atenolol, which helped the tachycardia, but made pretty much everything else worse. Ali is sharing her experiences, because of the philosophical questions raised, and to reach out, not because she is looking for a new treatment, though the concern expressed is of course appreciated. The symptoms she described, very common in CFS, GWI and ASD, represent the interface between the psychological and the physiological.
There’s a difference between sharing what has worked and telling someone else to “take the cure”. In the last couple of months, I’ve received so many protocol suggestions that there isn’t enough time left in this life to try them all, though quite a few probably have merit – at least seemed to work for someone. These suggestions underscore the many observations over the years that the best approach is to alter the internal and external environments in your favor whenever possible. With luck, you may hit something that makes enough of a difference to really impact the disease process. Treatments directed at reducing inflammation are useful. Strategies for silencing provirus need to be considered, now that we know what we’re thinking about. And an approach that makes us feel hopeful and peaceful is more likely to have a positive outcome, because the disease is so stress related. The fact that the illness is exacerbated by stress is the reason why the assumption was made that it is a somatoform disorder. The connection with stress was always obvious to me. It was the thing that made me think my doctors and colleagues were right about me in the beginning, since what happened was so different from what I was taught to expect getting sick might be like.
There is a divisiveness, an ugliness, that has developed within the patient community, and it comes out in some of the reactions when people disagree. There is often an angry edge expressing even mildly dissenting opinions. It’s defensive and a reaction to past disputes and slights. Ali mentioned the new young adult people’s forum and I read very negative, gossipy things about its creator. That young man is using all of his limited energy to provide a much needed forum for very isolated young people to come together. Why would anyone attack him? Many of the recent comments sound like people don’t feel heard and aren’t hearing each other. Due to variable response, different factions have developed. Accept that whether something did or didn’t work for you may have little predictive value for others. We should be coming together as a patient group and listening to each other, not fighting. Often past experiences of being doubted or judged color the reaction to current developments. We have all made mistakes. Let’s let it go.
I can’t believe the heat around my being “too easy” on Tsouderos. Even my last post was thought to be a sell out. I’ve received more negative mail about her than anything else I’ve written. I wasn’t around for her autism/vaccine articles, but there was once a photoshopped picture posted on the Age of Autism of her and others eating a baby for dinner. What’s that about? You may think she’s a bad reporter, or even a bad person, but she’s not exactly a baby murderer. It’s all too emotional. When you scream at people, it’s hard for them to hear you. It hurts the cause. There is a sense of entitlement that comes across and makes us an unsympathetic patient group. Everyone being healthy isn’t an inviolable right. People suffer worse every day all over the world. I imagine starvation is worse. Or being tortured. I treated a Cambodian woman in the ER once whose eleven children had been shot in front of her by the Khmer Rouge. When I think “why me?”, I remember her. There’s something wrong with this modern expectation that we’ll all be taken care of. The world is a really messed up place. Life isn’t neat. We don’t all get to be comfortable. It is a peculiarly modern phenomenon, this disease where so many people get sick and don’t die, living their lives with all modern comforts, but unable to get comfortable, no matter the luxuries.
>Where's any evidence that any kind of exercise "keeps the illness at bay"?! Any kind of exercise for me means a guaranteed increase in the amount and level of my symptoms. I want to exercise. I do still do physical things but it always comes at a cost to my health, I just don't buy what you said.
>Thanks for your posts Jamie. I have read and been given something to think about in every one of them. Keep it coming.
>If I had a well person in my life who could sort through the treatment options for me helping me negotiate the trying-this and trying-that…
If I could afford more comforts to make illness less wearing…
If at least well people understood how uncomfortable the disease is…
but more than anything, if my children could look forward to better health whatever might become of me myself…
the practice of remembering that others are in far worse situations and trying to help them, would not be so difficult,
and this disease would not be so hard to bear.
Hard at it is, I have always made that a practice, and I thank you for the reminder. However ill we may be, we need to still live kindly and care for others.
>Thanks, Jamie. You continue to tell it like it is. I appreciate your posts and your honesty.
>Great post. Thank you — and yes, keep it coming.
>Jamie,
You dog ILADS, for "I am against overly aggressive treatment that harms, e.g. as in indiscriminate prescribing of antibiotics a la ILADS guidelines." This for a known disease causing spirochete that everyone agrees antibiotics is the correct action for. And there is documentation all over the place indicating persistence of infection.
Then you spout off that HIV drugs are best for a disease with no known cause that you "believe" to be caused by XMRV because you have XMRV.
Then you say everyone else is too divisive.
That's unhelpful divisive crazy talk there.
>I am not attacking treatment for tick-borne diseases, including IV antibiotics. It is the ILADS guidelines that I object to. They remain unchanged despite a great deal of evidence that patients are being harmed, as explained in past posts. I believe that those guidelines are dangerous. This is not meant to be divisive, just my opinion, stated in an attempt to prevent injury to patients.
Jamie
>"I believe that those [Fill in the blank] guidelines are dangerous. "
I believe false beliefs or beliefs not based in 100% accuracy are dangerous.
I'm for whatever gives someone relief as in my experience with Lyme and CFS that is damn little.
I know many chronic lyme sufferers who swear by LT IV abx as the only thing that helps. That should be their choice absent a 100% guaranteed cure of all symptoms – if they choose that and know the risks – what else are you offering that is better? Nothing?
Well, you tell them that nothing is the best treatment for "people like you" while also claiming you should get HIV drugs for your favorite disease diagnosis and then look them in the eye and tell them you're not being hypocritical.
The problems with medicine start with the political science you're espousing that your beliefs are somehow more scientific and therefore your draconian measures for others are acceptable while you and those like you deserve largesse.
Can't have it both ways and not be called divisive and crazy.
>Where did I tell anyone else what to do? Other than a call to be kinder to one another.
Jamie
>Everyone dealing with all of the "new" diseases of this century are diagnosed with symptoms of unknown origin and unknown cure: MS, ALS, Alzhiemer's, Mad Cow, ME/CFS, Lyme, Autism, Arthritis and to infinity and beyond.
To disparage or deny medical treatment to any other of these is to deny treatment to them all.
What we have here are angry marginalized groups left by the roadside to die.
All are under-served and desperate. Desperate and with false beliefs about what does or does not work, because there are no facts allowed in the public domain.
Do not mistake lashing out as divisive. It's more like the lashing out a hurt animal does when it perceives a threat to the last thread of life it is holding on to.
Now be a friend to yourself, your daughter and all those with Lyme and admit you don't really know what the hell the truth is about what those with constant pain and suffering should do to relieve it, just that you've chosen something other than life long abx for you and your daughter.
You prefer HIV drugs which will eventually blow up your liver and kidneys and end you up in the same place as LT abx therepy but probably sooner than abx would, but who really knows that for a fact?
HIV drugs are just as over-hyped for AIDS as abx are for Lyme. They simply just don't really work. They'll all keep you alive – but just barely.
I know HIV people who are just as miserable and disabled as those with ME/CFS and Lyme. And yes, they take the latest and greatest HIV treatments available.
You're reaching for a desperate solution just like everyone else in these lifeless lifeboats of misery. So try not to sink everyone else's sinking boats while you lash out, OK?
We all get it and we've all been there.
But it's like in Moonstruck: "Cosmo, you're gonna die. There, I said it. Now stop seeing that tramp. [or trampling on others beliefs]"
>Well, I thought many parts of your post were beautiful and true.
You've put yourself out there, it's not easy. Even when I've disagreed with you, I've admired your passion for finding useful treatments and helping others.
I also think your list of treatments makes sense, and your point that "These suggestions underscore the many observations over the years that the best approach is to alter the internal and external environments in your favor whenever possible. With luck, you may hit something that makes enough of a difference to really impact the disease process."
Ali has also been very brave.
I hope you don't retreat, even if people end up writing you and venting or even misinterpreting you. And I hope you work on a paper for Medical Hypotheses or a similar journal on the vaccine thesis.
>Hi Jamie.
In your past two blog entries, you've mentioned toxic mold.
Buried in the following paragraph here, you indirectly refer to those previous mold comments.
>These suggestions underscore the many observations over the years that the best approach is to alter the internal and external environments in your favor whenever possible. With luck, you may hit something that makes enough of a difference to really impact the disease process. Treatments directed at reducing inflammation are useful.
Mold avoidance is not mentioned on your treatment possibilities list though.
Maybe you meant to include it as part of this item:
* Detox and avoidance strategies, especially for MCS, and specific dietary triggers, gluten, cassein, nightshades, sugar
However, for people with ME/CFS (as opposed to MCS sufferers who might fall into the CDC's vague CFS guidelines), toxic mold — and possibly other biotoxins like toxic cyanobacteria — seem to be of particular importance.
That's because they're very inflammatory, in ways that the vast majority of other toxins are not.
Best, Lisa
>I have great admiration for both you and your daughter. Your hearts are in the right place and you both are courageous women.
>It's truly infuriating to be told "If you would just do this, then you would be well".
Totally aggravating to hear this, because it's REALLY implying "If you don't, then you don't want to get better."
Can anyone say "Blame the patient-Guilt tripping"?
I can appreciate the sentiment of resentful replies in which people say they aren't going to take my advice and do avoidance, as they don't really see where this is relevant to their condition.
This is why I am careful NOT to tell people that they should do it. I am trying to get around making any such implication, as I don't KNOW who would benefit or not.
I try to restrict myself to saying that this is something that RESEARCHERS need to look into.
The only people I advise about avoidance are those who DID look into it, saw some signs that it applied to them, and want to know more.
You see, mold is doing something very quietly, very subtly and remains hidden from people because it so far transcends what mold is thought to be capable of doing, that whenever it strikes, the blame always goes to the nearest reasonable suspect.
(I'm sure that Supermold must be chortling with glee behind his dorky glasses disguise)
Those of us who stumbled over this thing, tried to blame everything else too.
But occasionally you run into a situation where no matter how hard you try, there just plain ISN'T anything else.
You've looked all over the telephone booth for some fiendishly powerful superbeing, and the only thing that steps out is that mild mannered dorky-glasses-wearing Clark Kent.. and he's the only suspect you've got left.
Anyway, this "elimination process" has happened enough times that researchers must be running out of excuses to "avoid" researching the mold factor.
I think they've darn near used them all up.
>Thank you for writing about your and your daughters experiences. I appreciate your food for thought!! I have a 17 year old son who has been sick for a year and a half. He enjoys walking a bit when he can, it makes him feel better – of course he doesn't do this when he is unable, but he is a former athlete who desires use of his body. He does find help through use of a physical therapist, sometimes stretching/flexibility, sometimes work on his head to relieve dizzyness, headaches and jaw pain. She relates to him as a "post viral" survivor herself. Twoboysmom
>And I'd like to say something about the post exercise crash phenomenon.
I would try to walk, just a few yards, for that was all I could do, on a good day.
I tried, and I crashed.
Tried, and I crashed.
Tried and tried, and I crashed and crashed.
Got knocked down so hard that every time I tried, I was LOSING ground, going backwards.
Went from being dang near a marathon runner, to being unable to make it to the corner.
Dr Cheney was struggling with how to handle this 'push crash' phenomenon, and said that I should just try mild exercise on the days I felt well enough to try… but don't overdo it.
So there I was, trying! I made it about half a block, and suddenly I just "hit the wall".
Ran out of steam, dead stop. Barely enough strength to crawl back to my house.
Strangely though, this had happened in the same place several times. It never happened when I went the OTHER direction. It was like momentary contact with this place was robbing my of my ability to exercise without crashing.
I told other people with the mystery malady about it, even showed them the place where it happened.
It felt like something was coming out of the storm drains next to the street. Like a burning sensation, right there. On that very spot.
One of my friends pointed over at a house and said "That's funny. That's where Sandy Schmidt lives"
————————————
http://articles.latimes.com/1986-06-07/news/mn-9956_1_lake-tahoe
160 Victims at Lake Tahoe
Chronic Flu-Like Illness a Medical Mystery Story
June 07, 1986|ROBERT STEINBROOK
INCLINE VILLAGE, Nev. — Sandy Schmidt, 42, came down with the mysterious illness soon after she ran a marathon in San Francisco last July. She got better before becoming sick again this spring, forcing her to quit her job as a business office manager. Running even one mile now would "put me in bed for a day and a half," she said.
>I find it really irritating that someone would leave aggressive comments here and then fail to actually own them! How about putting your name to your comments rather than just leaving them Anonymously? Everyones opinion here is valuable but being angry and aggressive is really not helping no one. Please find a more constructive way to make your point.
Thanks!
>I'm a long time advocate and XMRV+. Typically I tend to enjoy your writing, but I couldn't disagree more on a couple of things you brought up. The following comment is dangerous to our cause and possibly the same thinking behind the lack of interest in research and funding.
"Everyone being healthy isn't an inviolable right. People suffer WORSE every day all over the world. I imagine starvation is worse. Or being tortured."
I'm not sure where your from but where I live many generations have worked hard, sacrificed, even given there lives to confront those problems. Now we face new and more complex issues but the system refuses to rise to the occasion for what seem to be political and monetary reasons. I have been sick 14 years and completely bed bound for 4 years now. Extreme torture is exactly what this disease is. The truth is I would take starvation because death comes faster. Apparently you still have moments when life is bearable, but until you don't never suggest there are worse things. Yes the woman in Cambodia is tragic but I've never been able to have a wife or family due to illness. Is it better to have loved and lost than to never have loved at all. For 30 years the patient community has tried to be civil with minimal results, so I would argue the opposite of what you suggest. I guess we could keep trying the same thing over and over and hope for different results, but then the psychologists would be right. Its time we demand the attention by any means necessary.
>If you listen closely, you just might hear the standing ovation and clapping I am giving you for this blog. BRAVO!
You are doing a very nice job communicating with the patient community in a frank and relative way. I appreciate that this takes a lot of energy on your part and is voluntary. Thank you for your kindness in trying to help others.
BRAVO!!
>Thank you for the list of treatments. That is very helpful to me!
I disagree that because many people in war and famine-ravaged less-developed countries have it worse, that we shouldn't complain. Not complaining enough hasn't worked yet; it's time to complain much more loudly until we get help. Then we can get better and contribute hugely to our societies.
I don't think pwME think we have a right to health per se. We do have the right not to be kicked when we're down by our own governments.
>Thanks for the great post Jamie. Ignore the haters!
>I co-facilitate a support group for people dealing with cfs. One of our members kindly keeps our group abreast of your blog. I do not have cfs, so I struggle to understand the challenges of living with this (and like) illness(es) from the distance of one who has been graced with relatively good health. Thank you for the profound contribution you (and others) are making for those of us impacted in some way by this illness. Your writing helps me to better understand, for which I am quite grateful.
>It's bad form—parasitic even—for us simultaneously to avail ourselves of Jamie's medical background but disparage her when that background informs her opinions as a patient, blogger, and mom. I appreciate the balance she’s struck here.
As someone with CFS, I would’ve questioned her integrity had she remained silent about her outcome on the ILADS protocol. Secrecy fosters stagnation, something our patient population can ill afford. The fact that Jamie has “found a way to piss off nearly everyone” makes me hopeful that we’re in the midst a desperately needed paradigm shift.
If the answers to the questions of etiology, treatment, and cure were uncomplicated, none of us would be here. Jamie’s intrepid blogging will have contributed to what I hope is the ultimate obsolescence of these discussions. So, whether anyone agrees with her hypotheses, the fact that she asserts them furthers the dialog.
Thanks for your voluntary presence here, Jamie.
Bravada
>There are some people with this illness who are in such pain that it is like the worst kind of torture anyone could inflict upon them.
There are some people with this illness who are starving to death, at least as much so as any poor person in any far off Third World country, because they're unable to swallow or to digest any food and don't have access to TPN.
These are not the people who call you on the phone or write you e-mails.
But they're out there, just the same.
Best, Lisa
>All human beings deserve to be treated with respect…I don't think I'm the only one who feels this way. We all deserve way better than the treatment we've received, especially in a country so full of creature comforts, yet there's 'not enough money in the budget' to do the PROPER research that's required to 'unravel the mysteries' surrounding this horrific epidemic…How can you say that we aren't 'entitled' to be healed, to regain our lives? I am absolutely 'entitled' to EXPECT our government to fund the PROPER research and to have the 'good life' that I worked so very hard to attain! Instead, I've have been DEGRADED Year after year being told that my 'health problem' is all in my head and then I come to find out that not only is it NOT all in my head, but this illness that I've struggled and suffereed with my entire adult life has been swept under the rug the whole time by a government that could care less because it costs too much to research it and to heal it. Politics and greed have fueled the criminal negligence of our governments…and don't even try to tell me that our doctors aren't aware of the situation! That would make them quite ignorant and I'm not stupid enough to believe that. My anger is due to the fact that I know too much about this situation now. And I fully expect this situation to be resolved in time before I die a miserable death…I thank you profusely for what you're doing for us, but please don't make me feel guilty for not being grateful for what I have, that's just adding insult to injury…
>Jamie, thank you for the list of treatment options for consideration and for making it clear that these are suggestions only, that your list is incomplete and that your suggestions don't apply to everyone. That's the best it gets with CFS therapies.
I don't agree with everything you've written but expect you won't agree with everything I say either. How often does complete accord occur in real life? And how are we to handle differences appropriately as they arise? Misdirected anger has become a problem in the CFS community. As a psychologist who both treats people with CFS and has it, I see this often. Anger is both understandable and natural under the circumstances of a horrible, life-altering illness with nowhere to pin the blame. Directing and expressing anger appropriately is tricky when there is no obvious culprit. If a cashier cheats you, you talk to the store manager. When life cheats you… where do you go with that?
As Dan Peterson has said, "Those out in front take the arrows." So many CFS pioneers and those who have spoken up on behalf of CFS patients have become easy prey. It takes a tough hide to withstand the assaults directed at those who are trying to help.
I'm sure some people reading this are angry with me right now. Or is the anger really about feeling horribly sick, dismissed, misunderstood, ignored and leading vastly diminished lives? Let's remember that we're all on the same side and deserve to be treated respectfully even when our thoughts and experiences differ.
>Dr. Deckoff-Jones,
As much as I appreciate your thoughts on a number of issues, no matter what disclaimer you state at the beginning of your blog; patients, doctors, researchers are still going to associate your opinions with the Whittemore Peterson Institute. Even if you do not intend this, it is a fact.
Sometimes there are things that are right and not good to be said outloud just yet. There are patients, adults, children, families who need help immediately and your behavior and comments about "supposedly Intelligent people" and speculating about vaccines will make winning this war for the neuro-immune disease communities even more difficult than it already is.
I hope that you will consider weighing your words or making this blog private.
>Wow, some pretty bold and inflammatory statements Jamie. Did not see that coming. I tend to disagree with the entitlement statement.
I can accept the fact that I have a devastating illness to which I will likely never recover. I've never had the "why me?" thoughts you speak of. I know several people with MS that have a tough life too. People get sick all the time with incurable illnesses, but at least they arn't labeled crazy or lazy. They don't have to argue with social security, disability, and insurance companies about how difficult daily living is.
There are a few comments above that have it exactly right. Its time to declare an all out war on crimes against humanity and the people/organizations that continue to commit them. The fact of the matter is starvation and torture are not a part of the American ideology because people like you and me believe it's unacceptable. That is what makes our country so great. The idea of a better society with the nerve to follow through in creating one has always been the cornerstone.
At this point the louder and more aggressive we can be the better. After all how well has the gentlemens approach been working. Its true, a paradigm shift is needed, unfortunately it wont come by sitting back afraid to stir the pot just in case it portrays the CFS community as an "unsympathetic patient group".
>I agree with Justin, Lisa and others. We certainly don't have a right to be healthy and "comfortable" (whatever that is), but we live in civilized countries where we do have the right not to be abandoned, abused and maligned, and to be denied basic medical treatment. That is not too much to ask for. Calling us an "unsympathetic patient group" feels like a slap in the face to me, from someone who should know better.
Suffering in a situation where those around you with much less severe diseases are treated while you are left to rot is nothing to accept.
>After facing this disease for 20 years, heart surgery and cancer, I could care less about being labeled unsympathetic. Its true I am angry, but only because there has been no real attempt to understand this disease by the very people put into key positions to prevent this sort of nightmare from happening. String em up!
>I wish y'all could've seen the battle of Incline Village. Sure hope they make a movie about it someday.
Cheney and Peterson were glorious.
The CDC tried to bury us with a policy of "paltrification", minimizing the outbreak out of existence by trivializing us to death.
"No evidence" "Can't prove it" "unreliable testing" "exaggerated patient complaints"
"other doctors aren't seeing patients like this"
But then the CDC made a fatal mistake.
They challenged Dr Cheney and Dr Peterson's evidence in a statement to the local newspapers that there was little evidence of a mononucleosis outbreak and questioned the lab test used to diagnose the disease.
They expected Dr Cheney and Dr Peterson to just accept their verdict and shut up, like good little provincial doctors should.
Dr Cheney struck back!
In the Oct. 16 1985 edition of the North Lake Tahoe Bonanza, he said
"We are on firm ground. For the CDC and the Health district to say there is no mono is just not true. We could stand up in a court of law and prove 90 cases"
From that moment on, "Controversial" was added to the list of accusations against them.
Not because the evidence was, but because Dr Cheney had brought the "rift between four doctors in rural Nevada" to national attention.
Local doctors attacked Cheney for embarrassing their profession by speaking against the CDC.
They didn't even try to pretend that science should prevail or whether it was right or wrong for Dr Cheney to stand by his lab tests.
All that mattered was that Dr Cheney and Dr Peterson had dared to overstep their bounds in the face of the mighty CDC.
The evidence became almost meaningless. It was the CONTROVERSY that brought this thing out of the dark where the CDC tried to hide it.
Without that controversy, our outbreak would have sunk into oblivion, just as they wished we would.
If there's anything I've learned through this convoluted mess, it is that polite, measured discourse gets you nowhere.
Science prevails with an iron fist.
So, Keep on Truckin'
>I thought that the reason we were an unsympathetic patient group was because the government has covered up the illness behind a stupid name and labeled us as hysterical, but now I know it is because we have a sense of entitlement. Thank you for clearing that up.
>Hi Jamie,
I have followed your blog from day one and have apreciated the thought, time and care which you evidently put into it.
I also appreciate the fact that you have been prepared to come out and say what you honestly think and do so in such an eloquent way.
Recently, you have demonstrated a preparedness to "take one for the team" by saying some things that others wouldn't dare to do. I'm glad that you put your knowledge to this purpose and speak out about these things. I admire you for doing so.
Perhaps those who disagree with you so vehemently should try writing their own blog and do so in the same balanced and constructive way. They might then realise that being proactive (as you are) is far more difficult than simply criticising the work of others.
>If all that could be done was being done I would be more at peace and able to accept my disease. Instead the high paid fat cats within the government agencies get there free ride at our expense on our money. Reeves still continues to publish and waste money on absurd studies even after being more or less fired from the CFS division while the director says with a straight face CFS is of great concern.
How dare you tell me to stay calm, be careful not to come off angry. Every time someone in the CFS communty tells me to keep my emotions at bay I get more angry. Were talking about my life and well being (or lack of). Its time everyone in the medical community knows how very angry we really are no matter the consequence. If were portrayed as an "unsympathetic patient group" so be it
Also, starvation? Really? Lets compare apples to apples here.
The only glimmer of hope has been the things the WPI and Dr Peterson have accomplished with limited funding and in such short time. I dare say you may think twice about writing this type of stuff because you are now affiliated with the WPI. Don't discredit our one hope. They have enough problems to deal with it the moment.
>RE: Anonymous 11:45 pm
Jamie,
I implore you neither to privatize this blog nor to temper your comments. The resulting missed opportunities to educate; involve new hearts and minds; and inspire the old guard to reconsider its positions would be tragic. Please don't allow anyone’s choice to ignore your disclaimer that this blog does not represent the WPI to disrupt your stride. The increasing traffic and immediacy of reader comments here testifies to the importance of treatingxmrv.blogspot. If readers disagree with your opinions, they can comment, or better yet, offer a solution. When used to their best advantage, blogs are remarkably democratic, especially here where your readers have the freedom to post long, well-developed comments.
>If we all agreed on everything we would have evolved to live in a hive like ants or termites. When you write a blog all the hate surrounding the issues you write about will be aimed at you. Realize if you are creating controversy you are making a huge impact. I write a blog in Alaska, I know when I get death threats from the idiots I have told the truth. When one person gets better because of what they are doing or are not doing, someone else thinks if it doesn't work for them it works for no one. CFS/ME changes over time. I believe I have had it my whole life and my condition changes from good to worse and vice versa over time. Two weeks ago I was doing fabulous and after some stressful events I am feeling ill again. I can exercise now, but could not in the past. I have found many things I do or don't do that help a little, when I add them all together they have a big impact. Most of the time now I have no pain because of some solutions and a milder state of my illness. I know that can change at any time. I do the best I can with the information available to me. I live in Alaska where the doctors are about twenty years behind the rest of the country and still medically bully those with CFS/ME. Please continue to write for those of us who are on our own with no support and have the medical community against us.
>Thanks for making the edit on the list, making specific mention of toxic mold. :)
* Detox and avoidance strategies, especially for MCS, toxic mold exposure, and specific dietary triggers, gluten, cassein, nightshades, sugar
>I am curious why you chose to omit Ampligen as a treatment option. Coupled with your negative reviews of it in another recent blog it makes me wonder – what is your beef with Ampligen?
>Jamie, I just find it interesting that you would include things like ivig (which insurance wont' cover for this condition and costs more than ampligen and there is only 1 published study of 3 patients with CFS who used it) and GcMAF (which many patients are paying to fly to Europe for and again, not covered by insurance) but don't include Ampligen. Again, it just is curious to me why you don't put it on your list of possible treatments when it appears that you are trying to list viable treatment options.
As far as speaking to doctors whose opinions you value…there are currently three doctors who use ampligen and have long-term. I'm sure you know that. Peterson, Lapp & Bateman. I happen to have spoken to all three and although there can be downsides to every drug, the overall opinion is that ampligen can be very helpful. So I take this to mean that either you have not spoken to them or that you don't value their opinions? Or…they lied to me.
Also – there are patients advocating for it. Maybe not hundreds, but again, it's very hard to come by at the moment so not a lot of people have had the ability to try it yet.
>Hi Jamie!
I liked most of this post a lot, although I can see where some of the critics are coming from too. Sure, it's not very consistent to be criticizing the use of long-term antibiotics while experimenting with anti-retrovirals. But then, consistency is the hobgoblins of small minds, right? As far as "entitlement" goes, I'm not sure that that is what makes us an "unsympathetic" patient group. As another commentator said, it's mainly the name "Chronic Fatigue Syndrome" and the fact that our illness is poorly understood and somewhat ill-defined, unless you use a strict Canadian Consensus definition, which perhaps some patients would disagree with (although I like it).
I would add that one thing that is almost certain to make us unsympathetic is if we get on a vaccine-contamination theory high-horse, for which there is to date very little or even NO evidence. Patients who think they already know what the science will show about their illness are clearly not going to be viewed favorably by scientists or those who are in charge of research budgets.
I am glad you provided the list of possible treatments. I would add one relatively new option, which I am planning to look into, which is called enhanced external counterpulsation therapy (EECP). It is a therapy used for advanced heart disease, and is designed to improve oxygenation. Some CFS docs are prescribing it, and some patients are swearing by it. It is a way to get the positive effects of exercise on the body without the PEM risks of actual exercise.
The other thing I saw missing from your list was the protocol used for people with genetic mitochondrial disorders, which includes COq10 and L-carnatine, among other supplements. Because it seems likely that CFS involves mitochondrial damage, I think the protocols developed for those with such disorders might make sense for us, especially as they are without risk. Medscape has a section called "Treatment of Mitochondrial Cytopathies: Vitamins and Supplements," which tells about the protocol.
Thanks, as always, for providing this forum.
>I thought we already had this debate a month or so ago….
>I wrote a couple of comments answering above questions, including some thoughts on Ampligen. I wasn't happy with them, so removed them. I'll try to address your questions in a future blog.
Jamie
>Wow, stuck in a firestorm, huh? It's one of the hazards of putting your private life on public display in a blog, speaking from personal experience. I have been fortunate to have been blasted only a few times; my regular blog readers/commenters are all very kind and supportive.
I agree very much with your entreaty for kindness and respect toward each other. This is my #1 rule, in blogging and in life, to always treat others with kindness and respect, even (or especially) when we disagree. In fact, I was just discussing this with another blogger.
In that conversation, I was also recently emphasizing another point you made here: we must never, NEVER presume to tell someone else what is best for them. Besides being disrespectful, it is just inaccurate to assume that what works for one person must work for another. Besides the fact that this illness is so heterogeneous, each of our bodies and past medical histories is different also. This pushing of treatments on each other comes from a desire to help others, but that doesn't make it right. The best we can do is to share information (facts, research, etc.) and share our own experiences, in a nonjudgemental way, and allow others to make their own decisions based on their own bodies.
We have all suffered so much, from this illness, from a public who doesn't understand, and even from the medical community who have often dismissed us when we've asked for help…we just can't afford to attack each other as well.
Please keep sharing information – your experiences as a physician with CFS are extremely interesting to me and to many others.
Sue
>Rather than get angry we can just stop supporting what we don't agree with and align ourselves with what we do. I like putting my feelings into action and will to do that now as a result of the comments on rights. Nothing personal, I just don't align with the health rights stand stated stated here.
>I do appreciate your thoughts and research re: CFS/Lyme/XMRV as we wait for science to go forward. Part of the frustration is based on the murky definition of CFS for so many years. Dr. Coffin stated in November of '09 that we should have an accurate description for XMRV in 6 months and go forward from there. It hasn't happened and the frustration level is building.
I am also reminded of a comment made on a blog in '04: "There is an awful lot of cannabalism on the internet in CFS blogs". I've heard one patient say to another "I mainly read blogs in the U.K., they are more polite".
I have also noticed recently a "tit for tat" response between two medical groups. That doesn't help us either.
There are certainly some people who are responding who probably do not have any illness in the neuro-immune category but like to be an expert on the illness anyway. One constant comentor, whose background I am familiar with, comes to mind. Becasue so many are anonymous there could also be those posting who are still trying to cover up their bad research of the past 25 years and keep their reputations. As good and appropriate research goes forward I hope they lose.
As someone who has been sick for so many years, I have also been told many times about "a cure". At this point I think it is best "to listen to my body." Having said that, I have two more meds for the treatment list!!
I was on Florinef for many years for severe tachycardia. It is an imperfect drug but probably kept me from having a heart attack. I am now on 2.5mg Bystolic which is helping me a lot more.
Since ampligen is the only drug in Phase 3 trials for CFS, it really should be on the treatment list as well. The history of the drug and the company is quite lengthy and convoluted but I hope that you will have time in the future to explore it. The trials are currently expanding. 20% of the participants who meet indigent criteria get the drug for free.
Finally, we all need to use our limited energy to push apprporiate research forward. I like your intelligent and thoughtful blogs.
>Thank you, Susan and everyone contributing:
I have added Ampligen to the list (which should be viewed as a work in progress). I am not knowledgeable enough to justify a conclusion, though the anecdotal evidence I've heard so far is not supportive. I encourage people who have experience with Ampligen, patients and physicians, to comment here or write to me: jdeckoffjones@gmail.com
Warmly,
Jamie
>Great article. The treatment list is very helpful. You have definitely stimulated some interesting comments. I too wonder where the "entitlement" stuff came from. I am not sure how to take it. Life sucks then you die unless your one of the lucky ones. Is that the only point?
>I was approved for ampligen during the '96 trials. Dr Peterson told me "You have the perfect markers for a good response to the drug"
But Hemispherx turned me down for the fully funded study because I was "still ambulatory".
Hemispherx wanted a proof-of-concept on the most extreme cases, and I missed the cut-off point.
The cost-recovery program was beyond my means.
Dr Peterson was disappointed that we wouldn't be able to see how I might have responded, for he told me, "Just as during the Tahoe outbreak, you one still one of the purest cases of this illness"
Of those who had a positive outcome with ampligen, it was impressive. Got them walking again.
That's something, isn't it?
>Jamie,
Thank you so much for taking all the time, efforts, knowledge and feelings that go into your writting. Most are aware that you are putting the info out there hoping it will help others make their choices and that this illness is something noone has yet been able to figure out. We need people like you that will share your knowledge and experiences, it is all we have. Anyone that reads that you are doing anymore than that is wrong and no matter what there are going to be people like that. Stay strong, don't let the comments or writtings get to you. There is a lot of anger out there that is waiting on someone. Thank you Jammie I will put a lot of thought into the treatments you listed, other wise I would have none.
Thank you.
>i have to thank you for writing my blog for me. of course in the same blog you seem to have written what i wish more doctors would write: treatments you know have worked for someone in the past. everyone reacts differently to drugs and regiments, so having lots of options means ultimately finding what works for you. the part about responses running away with you was proven in the replies to your post. they're all still at it. every group i've approached in the only way open to me – the internet, has either ignored me because i wasn't part of their club, or been actively rude in the their condescending scorn. you produce one of the most rational, empathetic blogs about cfs that i've had the pleasure of reading. everyone has opinions, but not all opinions hold water or wear well, so i appreciated your doing what others involved can't seem to manage – including respect as part of your everyday approach to this disease and the various people who claim it.