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First Case Of ME/CFS Caused By Swine Flu

Discussion in 'General ME/CFS News' started by Cort, Aug 30, 2009.

  1. Cort

    Cort Phoenix Rising Founder

    Ken Friedman just passed this on:

    It'll be interesting to see of this plays out. Swine flu is often innocuous but appears to hit young people harder than older people. Most of the death in the San Diego area have been in young people. The Dubbo studies showed that over a range of infectious illnesses that people who had a more severe initial infection were more likely to come down with ME/CFS. There are some viruses - upper respiratory viruses (I believe) that don't appear to cause ME/CFS but apparently swine flu is not one of them.

    Can we expect an increased number of young people to come down with ME/CFS over the next six months?

    Missed opportunities. Here we are again; there was Hurricane Katrina - a great opportunity to see if stress does indeed play an important role in triggering this disease. Now there's the swine flu; what an opportunity to study the role of infection in this disorder - the CDC is already monitoring this but where are the CDC's CFS researchers? They're not there that's for sure. If at organization gave a damn about this disease you think they'd be all over it.

    (I can feel a nice nasty blog arising)
  2. jenbooks

    jenbooks Guest

    What exactly does "never recovered" mean? I'd be careful about calling it ME/CFS. In general the risk of sequalae from bad flus is higher--including later Parkinson's etc. And there is abundant research showing a strong correlation between EBV, which is ubiquitous, and certain cancers (which I'm sure you know). It doesn't mean the swine flu isn't bad for some folks and it doesn't mean they won't suffer other stuff later, but "never recovered" is a little premature for this teen, and moreover we don't know if he had other conditions (comorbid).
  3. Cort

    Cort Phoenix Rising Founder

    I agree that we don't have alot of information. Hopefully that doctor (Rosamund Vallings?) covered his/her bases; new fatigue and symptom onset as the flu presented itself that never substantially ameliorated. I would assume this person was one of the first to come down with the flu and its been six months since he became ill; hence he meets the definition of ME/CFS.

    Hopefully these assumptions are correct!
  4. dannybex

    dannybex Senior Member

    more info is definitely needed...

    Don't sudden-onset cases begin with 'flu-ish' type symptoms, but not necessarily the flu?

    And then there's the question of what is the actual trigger in those with sudden onset. Is it the bug, virus, bacteria, or some other environmental factor (like heavy metals, chemicals, pesticides, and/or traumatic stresses, etc) that weakens or screws up the immune system, leading to CFS/ME. Of course I don't know...just putting the question out there. I know that some with sudden-onset have also talked about pushing themselves too hard in the months/years prior to suddenly crashing.

    As for gradual onset cases like my own, I used to get the flu every other year or so...until I developed CFS, but haven't had it in at least 12 years.

  5. Cort

    Cort Phoenix Rising Founder

    Here's a blog I just did on the subject.

    The Wave Begins? Swine Flu, ME/CFS and the CDC


    Dr. Ken Friedberg, board member of the IACFS/ME, just reported the first documented case of a person coming down with chronic fatigue syndrome (ME/CFS) as a result of getting the swine flu virus. This is what he said:

    A Hard Hit Group Swine flu is often innocuous but when it does cause trouble appears to hit young people harder than older people - presumably because young people haven’t been exposed to anything like it in their lifetimes. Most of the deaths in the San Diego area have been in young people. Will swine flu create a lot more young ME/CFS patients? Will a significant number of young people find their lives turned upside down - perhaps for the rest of their lives - over the next six months?

    Of course we don’t know. Unfortunately we may never know - expect anecdotally - because the agency that should be watching out for this, the Centers for Disease Control, is, once again, asleep at the wheel.

    We don’t really know if some pathogens are ‘better’ at causing chronic fatigue syndrome than others. At least one study suggested that upper respiratory viruses do not cause ME/CFS. The Dubbo studies, on the other hand, showed that a wide the range of pathogens can trigger this disorder and that people who had a more severe initial infection were much more likely to come down with ME/CFS. Since the H1N1 (Swine flu) virus appears to be hitting young people harder than the rest the population it doesn’t take much to figure out that that group could experience increased rates of ME/CFS in the near future - and perhaps for the next several years (if the virus returns for several years).

    Dr. Friedberg then asked the next obvious question: given that ME/CFS is a serious disorder (the head of the CDC herself told us that) and the incidence of it in young people could very well rise sharply in the near future, one must ask what our agency in charge of commanding and controlling infectious diseases, the Centers for Disease Control, is doing to ward off this threat?

    Opportunity Knocks - Some good questions. One is struck first of all by how easy it would be to monitor the incidence of ME/CFS after swine flu since the CDC and state and local organizations are already monitoring swine flu patients. The CDC has spent an enormous amount of money on random sampling simply finding the ‘right patients’ for their studies. One would think they would be rejoicing at this opportunity; the virus, after all, which is everywhere, has already done their random sampling for them. No need for million dollar projects just to find the patients further studies. Their study population is already in their computers!

    The CDC has funded two expensive studies to determine if childhood sex abuse sets the stage for this disorder. Next they’ll will be examining the records for the community to determine if other childhood events can somehow start the process that ends up years later in this disease. We will eventually know what percentage of people who experienced X event 30 years ago ended up with ME/CFS.

    But what about the people that are about to have their lives turned around right now? What about those teenagers who may be about to embark on what could be a lifetime of suffering? Right now they’re going about their normal everyday lives. Over the next six months or a year or two years some of them are probably going to enter into an abyss - the depth of which will astonish them. Their parents will fruitlessly go from doctor to doctor looking for answers. What is our command and control agency doing about them?

    Opportunity Lost - It appears that they’re going to do nothing. One shouldn’t be surprised. They appear to be good at ignoring opportunities. Hurricane Katrina provided an opportunity right in their backyard to determine how important a role stressful events play in triggering this disorder - a key factor in their conception of ME/CFS. The CDC ignored them as well. While they’re were ignoring what some thought was the opportunity of a lifetime Dr. Reeves and Emory University were spending millions of dollars simply to find a small number of patients that they felt were acceptable to use in their studies.

    Now hundreds of thousands if not millions of young people will be exposed to a type of virus their bodies have never encountered before. Some of their immune systems will go on overdrive trying to fight it off. Some of them will die and if the past infectious studies are accurate about 10% of them will come down with a prolonged case of post-viral illness. Some smaller percentage of them will come down with a chronic possibly lifelong disorder with few treatment options. Will the CDC be following them?

    Sitting on the Sidelines (Again)
    - No it won’t. It’s a measure of the paltry effort CDC has put out over the years that one can hardly imagine that they would do so. The fact that the CDC’s CFS research team will be sitting on the sidelines during what will most likely be the most significant single infectious event to happen to the population of North America in our lifetime won’t surprise anyone with this disease. In a disease which has been shown again and again to be triggered by infection it’s unconscionable that they are letting this opportunity pass by - but its not surprising.

    This goes far beyond patients disillusionment with Dr. Reeves. This an indictment of the entire organization. It’s about an organization that doesn’t fund their CFS program, doesn’t monitor and doesn’t appear to listen to complaints about it; it’s about an organization that is trying to get away doing as little as possible about this disorder. A nationwide outbreak of chronic fatigue syndrome could be about to strike the youngest and most vulnerable amongst us and they couldn’t care less.

    The IACFS/ME Picks Up the Ball
    - Dr. Friedberg reported that the IACFS/ME is going to take some action. During a board meeting

    Fighting Back- The CDC has failed us again and again and they are failing us again. This time, though, there is something we can do about it. At the end of October at the CFSAC meeting in Washington DC CDC will unveil their CFS teams strategic plan. A major figure from the CDC will be there and hopefully you will be there to in one form or another. We won’t have another venue like this to make our views known for another 10 years.

    Something is happening in the patient and research community regarding the CDC that hasn’t happened before. More on that in a series of blogs on the CDC as we move to that all important date in late October in Washington, DC.
  6. Dolphin

    Dolphin Senior Member

    There have been studies that have shown that a percentage of people with proven infections go on to develop a post-infectious syndrome that is comparable to ME or CFS.

    So it seems feasible that the H1N1 virus could do it.
  7. kolowesi

    kolowesi Senior Member

    Central Texas
    swine flu and the CDC blog

    Great blog, Cort!

    Somehow you managed to get some positive energy in there, in spite of the frightening prospect of many more young people coming down with ME/CFS.

    I heard on TV that 2 billion people may catch it. That would be a good-sized dataset.

    But if they don't want to legitimize those who already have it, they won't be able to recognize to new cases. How ironic. They will miss an historic opportunity.

    I'm so glad we are finding our voice. You are part of that. I can't speak well, but I'll cheer you on!

  8. dannybex

    dannybex Senior Member

    Hi Tom,

    Yes, that's of course possible...but here's the question I keep coming back to:

    Why do most people get a bug -- the flu for example -- or a sinus infection -- and then get over it in a couple weeks or maybe a month, while others become and often remain chronically ill? Additionally, it's been noted that almost everyone carries most of the viruses found in CFS patients, yet the vast majority of them remain well and active, at least to the outside world.

    IMHO, there must be some sort of stress/disruption/dysfunction with the immune system, from a variety of sources, or possibly genetic influences, that results in 'immune dysfunction'.

    Just my opinion however...and certainly not proven. :)

    sorin likes this.
  9. Cort

    Cort Phoenix Rising Founder

    Could be NK cell dysfunction + HPA axis problems + ?. Dubbo showed that unusually high rates of pro-inflammatory cytokine production early in the infection were linked to ME/CFS. Thus patients had a stronger than normal immune response. Those cytokines are powerful players; its possible they exposed a weak link in the chain. I think Dan's thinking in right in line with what the WPI is thinking - immune dysfunction not a pathogen.

    That CFSAC meeting is going to be critical to our future. It looks like we're going to have researchers and prominent figures showing up to testify before the committee for the first time. We need to get patients there as well. This is an opportunity that will not come for another 10 years. Dr. Friedman called it the biggest opportunity in 25 years. :cool:

    The meeting is Oct 29,30th in DC.
  10. dannybex

    dannybex Senior Member

    Genetics could certainly play a part in the picture, but after hearing Dr. Buscher speak a few months ago, it just seems like for the large percentage of patients, there may be several chemical or environmental "stressors" that pile up, ultimately interferring with/or overwhelming immune function, and thus perhaps, causing the NK cell dysfunction, HPA axis problems, etc., etc..

    He's had patients completely recover, and I met one of them, and got to know her a bit. She was extremely sick for 16 years, with many many sensitivities that eventually resolved...but it took a long time to find the right doctor and treatments, not to mention a lot of hard work on her own, a lot of 'lifestyle' changes.
  11. Marylib

    Marylib Senior Member

    New Zealand
    CFS Swine Flu diagnosis

    Hi all,

    No need to worry about this diagnosis being legitimate. Dr Vallings (a she) has been at the forefront of ME/CFS diagnosis and treatment for years and is a board member of the IACFS/ME.

  12. Cort

    Cort Phoenix Rising Founder

    Thanks Danny, that's always great news to hear someone who's had this disease for so long recover. Its an amazing thing; it gives one heart :)
  13. sorin

    sorin Senior Member

    In my case I suspect that I got in the beginning of 2010 H1N1. In 2012 I developed CFS after doing intense physical exercises. I was never tested for H1N1 because no doctor suspected me of that. I am wondering if now, after almost 6 years is there any blood test that would let me know if I was infected (or I am still infected) with H1N1? If that is confirmed is there any treatment available for this? I assume that meanwhile I got other complications too, apart of H1N1.

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