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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hi Kina,Do people not remember the devastation caused by smallpox, polio, whooping cough, measles, mumps, rubella etc. Back in the day, many many people lost their lives to these diseases. I remember having measles and mumps. It wasn't pleasant. Children these days don't have to suffer from these illnesses because of vaccinations. Nobody has ever claimed that vaccinations are 100 percent safe for everybody but scientific research has shown over and over that they don't cause autism.
It's really hard for me to swallow all the anti-vax stuff. Canada and the USA have very low rates of vaccine-preventable diseases, but this isn’t true everywhere in the world. The only disease that has been eradicated from the world is Smallpox. Polio no longer occurs in the U.S. due to vaccinations, but it is still paralyzing children in several African countries. More than 350,000 cases of measles were reported from around the world in 2011, with outbreaks in the Pacific, Asia, Africa, and Europe due to lack of vaccinations. In that same year, 90% of measles cases in the U.S. were associated with cases imported from another country. Only the fact that most Americans are vaccinated against measles prevented these clusters of cases from becoming epidemics.
I think saying that vaccinations are bad is forgetting the past thousands and thousands and thousands of deaths from smallpox, polio, measles etc.
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I have to wonder why is all this anti-vax stuff consistently posted on Phoenix Rising as we are a site for ME/CFS.
Yes, that might be the question. I know that my immune tests show that my immune system is constantly in fight mode, but it doesn't seem to be able to do much. Though I posted about my experience of the reality of living without childhood vaccinations, later in life (after I had early symptoms of ME) I had a huge number of "heavy-duty" vaccinations when traveling repeatedly to 3rd world countries. I did react very badly to these and do wonder if they impacted my immune system in some way.It seems to me that the real question is wether someone with CFS/ME/SEID should be vaccinated? It appears that most people feel that our immune system is constantly turned on or acting abnormally. The fear, and mine included, is that the stimulation of the immune system by a vaccine would cause a crash or possible a worsening of symtoms which one might not recover from.
I got a flu vaccine when I was at baseline and it caused a frightening crash. I haven't had one since--nor have I caught the flu--at least not in a way that I could detect, though I am suspicious that even though some of us are not able to "get the flu" in the normal way, we may get it in ways that are not typical, like an exacerbation of ME symptoms.I'm trying to figure out if the cure, a vaccination, is worse than the disease,i.e. the flu. Dr Montoya's position is that if you are at baseline and not in a crash, then he would recommend the vaccine against the flu. On the other hand, if you are in a crash, then probably not. I'm still uncomfortable with this recommendation.
It seems to me that the real question is wether someone with CFS/ME/SEID should be vaccinated?
Because of the possibility of some populations being more susceptible to vaccinations reactions as well as situations such as children getting chemotherapy, IMHO, it's even more important that others do get vaccinated.
Unfortunately, Dr. Jones seems to buy into all the anti vax propaganda and as you said the real question is whether our population should get vaccinated.
While anced It can be problematic to only rely on anecdotal information
Appeal to authority doesn't work when the "authority" has displayed some stunning ignorance involving her own profession. Such as claiming that HIPAA doesn't apply for foreign patients who visit her in the US I'm not saying she's necessarily wrong about everything, but I have trouble taking her proclamations seriously, unless she has something substantial to back them up.Dr. Deckoff-Jones doesn't "buy into" anti vax "propaganda." She's educated enough to form an opinion and as a doctor has seen for herself how some are harmed by vaccines.
Appeal to authority doesn't work when the "authority" has displayed some stunning ignorance involving her own profession. Such as claiming that HIPAA doesn't apply for foreign patients who visit her in the US I'm not saying she's necessarily wrong about everything, but I have trouble taking her proclamations seriously, unless she has something substantial to back them up.
That said, there are some situations where vaccines are contraindicated based on scientific research and principles. ME/SEID, for example, has had several studies done where the flu vaccine provoked an immune reaction of indefinite duration which the study authors did not understand the reaction. And due to the reactionary anti-anti-vax sentiment created by overly broad anti-vax sentiment (in turn probably created by overly broad pro-vax sentiment), each paper heartily endorsed the flu vaccine for ME/SEID patients, right after confessing that something unpleasant and mysterious was happening.
I think a middle ground must be found, instead of each side getting progressively more extreme like they are now. Some progress has been made in moving some toxic substances from vaccines, which is a start. But people without a good reason to think that their children will react (such as due to prior reactions in the child or siblings, or parent reactions, etc) need to get over themselves. In those cases it's a matter of a tiny or nonexistent risk of vaccine reaction, versus a much larger risk of getting a very nasty disease which could cause death or permanent damage.
And researchers shouldn't be afraid to say "We don't know what's going on with this patient group in response to flu vaccines ... maybe it's not such a good idea to the vaccine until we know more." And even then we can still weigh the risks - crash or relapse versus a particular disease. The flu probably won't kill me, so I'll stay away from that vaccine. Other things could kill me or cause significant damage, so I'd probably get those vaccines (sans egg or preservatives if possible) if they were indicated.
Aach, my brain sometimes.
I appreciate not getting the vaccine if you live in a city. And if you don't travel to endemic areas, ever. Not getting it because you have been exposed is a bit of a gamble, though, as you've no idea what strain will be heading your way. But that brings us back to what strains are even covered. Sigh.
The mechanism of the vaccine isn't really vaccinish. The vaccine travels from the human into the tick and disables Borrelia in the tick's midgut, before it can infect the human. Supposedly.
ETA, relative to Jamie: Some might say she is unorthodox. She appears uncomfortable with dogma, and I kinda admire her for that. She offers alternative perspectives that sometimes make readers uneasy and force them to think.
These can be good qualities in an advocate or clinician.
To me, this thread speaks eloquently to the underlying paradigm of fear, distrust and marginalisation of anyone who offers dissenting or even questioning views on vaccine safety.
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If we can't talk about this stuff on PR, then where can we?