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

August 31, 2009

Posted by Cort Johnson

THE CDC/CFSAC  BLOGS #1

Dr. Ken Friedman, 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:

Regrettably I must inform you that the first case of post-swine flu CFS has been reported to the IACFS/ME (the International Association for Chronic Fatigue Syndrome/ME).

The patient is a 15-year old male New Zealander who contracted H1N1 on a trip to Mexico and never recovered.

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. Friedman 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?

The report raises the obvious issue of an increase in the number of adolescents in the United States who contract CFS subsequent to an H1N1 infection. What measures can be taken and what resources can the CDC and the National Institutes of Health put into place to minimize the occurrence of post-swine flu CFS? What measures can be taken and what resources can the CDC and the National Institutes of Health put into place to promptly diagnose and treat adolescent post-swine flu CFS should it occur?

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. Friedman reported that the IACFS/ME is going to take some action. During a board meeting

It was agreed that a case study would be written and submitted for publication in a refereed journal.  By doing so, greater credibility to the occurrence of post-H1N1 CFS will be given.

The IACFS/ME will make every effort to alert the medical community to the potential increase in the incidence of CFS, particularly in the adolescent population, both nationally and internationally.

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.

23 comments

{ 23 comments… read them below or add one }

Joanne Drayson September 1, 2009 at 4:19 am

An excellent post highlighting the struggles ME/CFS patients have not unlike the struggles Lyme Disease patients have.

In fact there are many parrells with these two illnesses such that for myself and many others I am in touch with my/our ME/CFS was found to be as a result of Lyme Disease (Borrelia infection from a tick bite the smallest tick being the size of a poppy seed so we are not always aware of a bite).

With Lyme and I suspect ME/CFS the body seems to travail along ok and then something triggers the illness to get out of hand and beyond the ability of the immune system be it viral, vaccine, another bite or anything that puts the immune system under stress.

Sadly our health agencies follow IDSA guidelines on Lyme Disease. These guidelines are currently under review. Details of a review hearing are available on their website. Stephen Phillips presentation was excellent highlighting the problems over seronegativity and persistent infection needing long term antibiotic treatment. He highlights that on 18 occassions the authors of the 2006 guidelines were even involved in that research showing seronegativity and persistent infection, yet they had failed to mention in their guidelines.

With such problems going on how many people with ME/CFS are properly assessed to see if their ME/CFS could infact be as a result of Borrelia infection Lyme Disease.
If you are interested in reading more there are many links on my blog which lead into ILADS and charities as well as research and interesting articles.

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Keith... September 1, 2009 at 7:35 am

Cort
If wecan’t be there physically for the CFSAC meeting at the end of october what would you recommend we do to be heard. Who could we write a letter to or make a phone call to. What would be most effective? This is a great opportunity to study how an infection inititiates CFS and see how many people develop CFS from this. There are so many research inititiatives and ideas that could come from this! I guess the CDC may not care but what else is new. Keep up the good work! Thanks you.
Keith

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cort September 2, 2009 at 10:27 am

Hi Keith,

Yes there will be several ways to participate and we’ll be talking about them in upcoming blogs. This is the first time that patients, support groups and researchers are coming together on one issue. It’s a chance for us, is if we choose to do so, to make a real impact. On the other hand we can succumb to the old familiar thought patterns; nothing makes a difference, the CDC can’t be reformed, the situation is hopeless, etc.. Making those ideas real will ensure more of the same. Making the opposite ideas real (“we can make a difference”) will give us the opportunity to make a difference. I can tell you that there are some prominent people who are energized by this topic who have not been before. We have a chance to make a real impact if we choose to seize it.

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Nancy Henson September 1, 2009 at 9:23 am

I would like to know if the Whittemore Inst. will in some way be involved in this possibility of a new wave of ME/CFS patients. After all its founder started the Inst. due to her daughter’s illness not having appropriate help. Would they not be interested in something that might be more apt to affect children?

Cort, love to read an interview by you with Ms. Whittemore or one of the researchers on this.

By the way. Great article. Makes me very, very scared, however. My one and only granddaughter is very susceptible to everything that comes along. She has a lot of allergies and has had pneumonia recently. So her 8-year old immune system is already compromised.

Nancy

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cort September 1, 2009 at 1:22 pm

Hi Nancy – . Hopefully the Whittemore Peterson Institute will be involved. They will certainly be asked. It’s hard to imagine that they wouldn’t be. We’re in a very different situation than we usually are with regards to these matters. Usually the patients howl and the researchers sit on the sidelines. This time the researchers are going to be involved; the IACFS/ME is committed to making the CFSAC meeting a focal point; they are working on getting researchers there and we definitely need to get patients there.

My hopes with regards HINI is that many people have already gotten a taste of the bug during the spring and summer. I read at one point that all the flu tests were showing HINI. I came down with a cold – so did everyone in the house – I’m hoping that was HINI! (Love to do an interview with Annette some time)

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perpetualspiral September 1, 2009 at 9:16 pm

I’m wondering if there have also now been documented cases of ME/CFS resulting from the H1N1 vaccine too. It seems like whether you get the vaccine or not, you are at risk for ME/CFS either way. It’s confusing. It’s causing anxiety. It would be really nice if we had some clear answers and an objective comparative assessment of the risks/benefits of the vaccine and the swine flu it self. And what about those of us who already have ME/CFS? Is the swine flu and its vaccine going to make us worse or are we “safe” from the after effects?

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Johan September 2, 2009 at 3:22 am

Isn’t the diagnose too soon? Normally, they only diagnose CFS after at least 6 months. As I recall the swine flu started in March this year, so he must have been on of the first victims?

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Keith B... September 3, 2009 at 5:28 am

Cort
I look forward to the upcoming Blogs and my family and I will definately do what we can to make a difference. Thanks for being on top of all these CFS/ME happenings.
Keith

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LUCY September 7, 2009 at 10:36 pm

I developed CFS the winter that I came down with the Hong Kong flu. I missed a half year of school being bedridden. This winter, it will be 40 years. I was ten years old. Let us all, to the best of our ability, stand up for these children. Thank you Cort for your dedication and courage.

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Tammie September 11, 2009 at 5:17 pm

Johan, I was thinking the same thing, but I couldn’t rememebr exactly when the Swine Flu cases started.

In any case, it’s awfully interesting that they jump immediately on the one case that might link swine flu to CFS, but try to downplay all the complications possible from the vaccine (complications which inc a strong possibility of getting CFS, GWS, GBS, etc from the vaccination). I mean, of course I do not want anyone to get the hell that is CFS, but one case is not much compared to the numbers of cases of adverse effects, illnesses, and even deaths linked to vaccinations…and they try to say that those numbers are insignificant?!

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cort September 13, 2009 at 3:36 pm

Actually it was an ME/CFS doctor who noted this. The vaccination issue is another issue entirely; one we all have to be wary of but that was not the focus of the blog simply because the blog was about something else.

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Tammie September 15, 2009 at 10:41 pm

Sorry, Cort…..I was linked to your blog from another article that was specifically about pushing the vaccines and I think I got a bit carried away.

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cort September 26, 2009 at 6:51 am

No problem! The vaccination question is a real one. I would note that the CFID’s Association is applying for a grant to study, among other things, if vaccinations do kick off an abnormal immune response in some patients. I hope they get it!

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Marc September 26, 2009 at 4:29 am

I have an 11 year old son who tested positive for glandular fever in March….doctor said that the test results were showing he had it somewhere between November and Feb. He experienced approx 3 bad colds/flu in the first half of this year and then in July, middle of the Australian winter, contracted Swine flu. It has now been 9 weeks and he has not been to school….we sent him for two days when we thought he was a bit brighter, but by the second day, they carried him to the car at pick up. The overwhelming symptom he has is fatigue, sometimes a headache and occasional. The doctors say it’s just going to take time to recover because his immune system was already compromised when he got the swine flu. I will be devastated if it leads to CFS…..my wife, his mother, has lupus, and I have seen her have to courageously fight her battle when flares strike her down with the fatigue and bodyaches. I guess time will tell, but I will follow this blog with interest and wish all of you the best .

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cort September 26, 2009 at 6:49 am

So sorry to hear about your son! I hope he slowly but surely crawls out of it. If it does turn out to be CFS some physicians do think that young people, while they made dip very low for an extended period, do have a better chance of working their way out of it. The autoimmune connection is intriguing; my mother had Sjogrens syndrome and the CFID’s Association has applied for two grants to study the possibility of an autoimmune response in ME/CFS. Good luck with everything!

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sara October 6, 2009 at 11:55 am

Cort,
Is there a blog section or web site location to discover what leading CFS physicians recommend about the risks / benefits (if any) of H1N1 vaccinations for those of us with long standing neuro-immune ME/CFS with heavy viral onset?

I have avoided flu shots since diagnosis but H1N1 can be deadly and wonder if a vaccination could be helpful or harmful according to medical experts.

Many thanks for all your great work on behalf of our community!!!

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cort October 6, 2009 at 5:59 pm

Hi Sara – that’s a great idea for a website! I don’t know of one. There are several posts on the Phoenix Rising forums that discuss various doctors recommendations regarding swine flu vaccinations. Most of them are in the General News section. There’s definitely some good information there. Here’s the address for one of them: http://forums.aboutmecfs.org/showthread.php?t=236&highlight=h1n1

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cort October 9, 2009 at 9:37 am

Thanks for the idea Sara. I put a page up on the website with different doctors recommendations regarding vaccinations for ME/CFS. If there’s anyone I’m missing please let me know. Thanks. http://aboutmecfs.org/Trt/Vaccinations.aspx

sara October 10, 2009 at 7:41 am

Many thanks Cort for adding the new vaccination web page!!! Plus your blog and website are my best resources for news about our serious health challenges and treatments.

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Stacie October 16, 2009 at 3:58 pm

Hi there, I’m so glad that I found your site! My daughter who is 10 years old became critically ill with H1N1 (confirmed novel H1N1) on August 24th. She was on a ventilator and in a medically induced coma for 8 days. She developed respiratory failure and sepsis. Prior to this she was a perfectly healthy little girl, with no health conditions. After 19 days in the hospital she finally came home. However, since her recovery began we have been seeing many odd things, too many to list here, but from various parts of the brain, fatigue, pain, thermoregulatory, emotional, cognitive, motor and sensory. We were told that it at first were the drugs wearing off, that it was maybe sensory integration disorder, or a hypoxic brain injury. None of these fit all of the symptoms we were seeing. We were also told that they were seeing some kids that have survived being critically ill with H1N1 developing these “weird neurological symptoms” but went no further as to a cause. A friend of mine that is a physician actually came upon the diagnosis of ME (all though it hasnt been quite long enough for an actual diagnosis, she has so many of the symptoms) Your site has been very helpful to me, and the article about the H1N1 and ME really struck a chord with me, and I thought you might like to hear our story.

thanks, for all the helpful information, I am certainly going to continue to visit your site!

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meadow October 9, 2012 at 10:50 pm

10/09/12 posting: I was a teacher on the Navajo reservation in AZ in during the epedemic. I had long-suffering dental problems right before I contracted the swine flu. I was never given an ‘official’ diagnosis, but my school was closed for a day or two for disinfecting, after one of my students WAS officially diagnosed. Other students were diagnosed and at least two of us teachers were ill for at least six months. The fatigue was incredible for both of us and I continue to have fatigue problems. What should I do about the children…and myself?

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debra Rushing April 30, 2014 at 10:59 pm

Noticed that most post are from 2012 ….this is 2014 -so don’t know if anyone will read. Anyway, I have been trying to figure out what the heck I have….Fibro/CFS/ME/Lyme. For around 4-5 months before Christmas 2014 I started hurting pretty much all over …mainly in the knees and back. Then a couple of weeks before Christmas I came down with Swine Flu , my husband did too….he got over it….I did not. I believe I have Lyme Disease after tick bite/rash/glands swelling in 2012 and my health deteriorated gradually until the swine flu wiped me totally out. I am unable to walk for long without the aid of a walker and am still going down more each day. Anyway…does anyone have similar history of disease? If so……what the heck is it .

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debra Rushing April 30, 2014 at 11:02 pm

In response to Meadow…I also had major teeth problems about the time my pain started getting worse with the Fibro.

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