I remember thinking Rich Von Konynenburg had gone off his rocker when he proposed, years ago, that autism and chronic fatigue syndrome (ME/CFS) were somehow related. Looking at autism’s severe cognitive, communication and emotional issues, the male gender bias, the vastly younger age of the patients and the two just didn’t fit at all for me.
Autism and ME/CFS look very different on the outside but they share some similarities on the inside
It’s not clear that they are but appearances can be deceiving. The Klimas/Broderick/Fletcher team is making it clear, for instance, that two people with Gulf War Illness and chronic fatigue syndrome can look exactly the same clinically but differ enormously under the hood.
It’s also possible that people who look very differently clinically, say people with autism and people with ME/CFS, might look much more related physiologically. Dr. Kogelnik, Dr Nathan and Dr. Hornig have all remarked on possible similarities and when Neuro-Immune institutes show up, both autism and ME/CFS are often in the mix. It was the pathophysiological similarities between the two which enticed Rick Von Konynenburg to take up his glutathione work. They include:
- Poor natural killer cell functioning (low cytotoxicity)
- Low glutathione levels (brain -ME/CFS)
- High rates of oxidative stress
- Th2 immune shift
- High sensitivity to toxins
- Many gastrointestinal problems including dysbiosis, leaky gut, gluten intolerance
- Sleep disorders
- HPA axis dysfunction (decreased morning salivary cortisol)
- Possible glutamate excitotoxicity
Advances in autism were summed up in a recent article in the New York Times. Substitute ME/CFS for autism in many places in this blog and see what kind of a fit you get. Sometimes you have cheat a little; autism is far better studied than ME/CFS but if you connect the dots what you get is an infection triggered disorder causing inflammation and immune activation in the brain….that show up looking like autism in some cases perhaps like chronic fatigue syndrome in others.
Inflammation
Dr. Klimas, Dr. Maes and others believe ME/CFS is, among other things, an inflammatory disorder and it’s pretty clear that inflammation is a key driver in about one-third of autistic patients. (There’s another similarity – subsets :)).
Infection triggered Illnesses
Just as in ME/CFS infection, a very early infection – in the case of autism – can be a trigger. Population studies indicate an infection during pregnancy increases the mother’s odds of having an autistic child. A bacterial infection in the mother during the second trimester increases her odds by 40%. Getting a serious enough infection to land the expectant mother in the hospital triples her child’s odds of getting the disease.
Now replace autism with ME/CFS and shoot forward several decades in a baby’s lifespan and watch some bug, maybe any bug, from Epstein-Barr virus to giardia to enteroviruses knock adolescents and adults for a loop – often permanently. The boomers are getting exposed to fewer infections but when they do encounter them, they appear to be getting hit harder by them.
It turns out that the pathogen, though, is probably little more than an innocent bystander.
The Inflammatory Disorder Epidemic and ME/CFS
Infection per se does not appear to be the culprit. Autism rates are up at same time mothers and others are getting fewer and fewer infections. Paradoxically, a dropping incidence of serious infections over the past 30 years has coincided with a boom – what some people call an ‘epidemic’ – of inflammatory and autoimmune disorders. Asthma is now believed to strike 1/10 children in the US – double the rate since 1980 and autoimmune disorders effect about 1/20 people in the US. Both can be triggered by infections.
is Chronic Fatigue Syndrome part of the inflammatory disorders ‘epidemic’ appearing over the past 30 years in the U.S.?
Does ME/CFS belong in this group? Did ME/CFS explode in the 1980’s or were a large number of very sick people simply just finally uncovered? Nobody knows but its possible chronic fatigue syndrome is just another example of something going wrong on a very large scale in recent years. That something is the female immune system.
In autism the problem appears not to be the infection, but the mothers’ immune system. Dr. Hornig noted in her NSU talk on chronic fatigue syndrome that she believes the immune response to the pathogen was probably more important that the pathogen itself.
Researchers now know that, infection or not, the amniotic fluid of fetuses who later develop autism is inflamed – not a lot, apparently, but possibly just enough in this early stage of growth to contribute to a devastating process. They know that a mother diagnosed with asthma or allergies during pregnancy – two signs of her immune system going off the rails a bit – increases her child’s risk of coming down with autism.
The same general trend runs true with metabolic syndrome, a disorder associated with insulin resistance which is also characterized with, yes, low-grade inflammation. A mother with rheumatoid arthritis increases her child’s risk by 80%, and if she happens to have celiac disease her child’s odds go up by a whopping 350% and that takes us to the gut.
Immune Activation
The big question, then, may be what has gone wrong with our immune systems? One answer could lie in our environment. Researchers, taking note of the reduced prevalence of autoimmune and inflammatory disorders in developing countries, are asking what’s different between the two and one difference is very clear; the number of bugs present….
Would adding some ‘bugs’ to our internal ecosystems reduce the inflammation present in ME/CFS and other disorders?
People in developing countries are exposed to more bacteria and other bugs and that exposure could be key. Studies find that wild rats exposed to lots of different pathogens can quickly put a lid on their inflammatory response, but laboratory rats can not. Why? Nobody’s sure but some believe the parasites the wild rats carry – and they’re loaded with them – are responsible. (Some pathogens have figured out a way to blunt the inflammatory immune response.) It may be that to be human, has, until the 50 years or so, meant being loaded with ‘parasites’ and that includes things like (ugh) worms and s here we are at gut; i.e., the ‘second brain’ and the biggest single immune repository in the body.
In her NSU talk, Dr. Hornig linked low gut enzymes and massively changed gut flora in Autism to low antioxidant levels in the blood which lead to inflammation which lead to brain issues. Bacterial imbalances in the gut have been associated with arthritis, diabetes, autism and other disorders.
How to fix the problem? If the theory of bacterial/parasite imbalance is correct the fix is simple; replenish our natural ecosystem by returning the bugs to our guts by using such therapies as probiotics, worms (yes, worms) and fecal (yes) transplants and the inflammation that is knocking so many people about will go away…..
The Gut Series on Health Rising
All this is really an introduction a new series on the gut on Health Rising that will appear over the next couple of months. We’re going to look at gut composition, how to diagnose and treat small intestine bacterial overgrowth (SIBO), how the gut can affect the brain and the mind, how probiotics, fiber and diet fit into all this, and we’re going to explore some new, different and some would say disgusting, therapies that just might help such a fecal transplants and worms.
Very interesting, Cort – I hope you might cover macrophage activating factor as part of your upcoming ‘gut’ series – it is, after all, a probiotic in its yoghurt form but a very specific one and a lot of PWME are experimenting with it.
Big topic Sasha – but good idea…I’ll put it on the list…
Hi Cort, worm therapy for CFS and other autoimmune conditions is used by an increasing number of patients. Unfortunately the medical world generally doesn’t acknowledge the potential for the immunomodulatory effects of helminthic therapy (HT) to help these patients.
Scary stories of people with rampant parasite infections are about as relevant to proper HT as insane unlicensed maniacs driving unsafe cars are to today’s relatively safe motoring practices. There is great information on the history and research of HT, together with treatment guidelines and lists of helminth suppliers, at htwiki.org
Also the FB group Helminthic Therapy is very helpful to anyone interested, even if they are not treating.
It’s time to put the pressure on for better “spitting” of these diseases – and ME in particular. We keep hearing about “subsets”. One of the extraordinarily frustrating things about this “experience” is being put into the same container as Peter White’s patients and then having to spend years explaining to people who should know better that one is in no way similar to those folks. And it can happen even in places like Klimas’ clinic.
What’s the holdup on that? Article please!
Interesting article and I have to say that the thing that drew me to Rich Van K was hearing him talk about autism and ME being the same, or similar, illness but with different age of onset. It made such sense.
The one thing I can’t believe, is that you have written this article discussing increased incidence in last 30 years, similarities between autism and ME, reduced prevalence of inflammatory and autoimmune conditions in developing countries, immune dysfuntion/activation and autoimmunity and inflammatory conditions and you never once mentioned the role of vaccinations.
Why is no-one seriously looking into this? Obviously, that was a rhetorical question, because of course profits and money are the reason few researchers are investigating this.
I’m pretty much on the other side of the fence than floydguy on this one. Too much emphasis has been placed on splitting patients into different little boxes which are then given a label as if this in any way explains what the root cause is and is contrary to recent trends which have seen calls for conditions to be grouped in terms of the underlying pathology and not just on the basis of symptoms.
Why not consider that these conditions might be connected – as quoted in the NY times lately – until the 70s autism was referred to as childhood schizophrenia.
I’m also not convinced by Dr Klimas’ proposition that ME/CFS and Gulf War Illness have similar symptoms but different underlying pathologies.
I’ve been plugging this paper for a while not least because it sets out a plausible mechanism that may explain why the various (apparently unrelated) exposures encountered in the gulf war can also result in the same underlying pathology (not a million miles from similar models discussed here) but that may also underlie ME/CFS and other overlapping ‘multisymptom conditions’ :
Oxidative Stress and Mitochondrial Injury in Chronic Multisymptom Conditions: From Gulf War Illness to Autism Spectrum Disorder
Beatrice A. Golomb
http://precedings.nature.com/documents/6847/version/1
PS – Of course I don’t agree with lumping patients together on the basis of common symptoms such as fatigue; but if exploring commonalities between various conditions can help find the underlying problem, ‘splitting’ may help explain why individuals are affecting differently even when given the same diagnostic label.
At the broad level, I think it’s helpful if we could all be put into a broad box that involves say ANS damage but at the clinical level (ie treatment level) I vociferously disagree. We know that various treatments are very helpful to certain percentages of people. Ampligen for example can be awful for some and it looks like Rituximab is the same. And like it or not there are people like myself who think that exercise ultimately is beneficial – even if its misery in the short term. I really don’t see how from a treatment perspective lumping helps unless you think driving wedges into the community is somehow helpful.
My guess is that we are possibly all suffering from some type of “brain” damage. We’ve just come rom various angles. GWI from chemicals, ME maybe from viruses, Autism possibly vaccines. There are complicated interactions between environment and genetics occurring causing different presentations of the same phenomenon. So if this true then lumping could be helpful for political, diagnostic and possibly ROOT cause treatments.
Baranuik believes, I believe, that it all shows up as similar types of brain damage. It imagine that Klimas and Baraniuk could both be right; different kinds of immune dysfunction end up somehow as a kind of broad disturbance in the brain…..
The idea that gastrointestinal issues contribute greatly to autism or that microbial populations need to be replenished in a wide variety of disorders does open up possible options for ME/CFS so I appreciate the lumping there….I imagine that treatments will end up being unique to each disorder but there may be underlying similarities.
Floydguy – excuse me if you mentioned this before but can you say what kind of exercise protocol you’re on that worked? I would point out that while GET gets poor ratings in patient surveys, there’s always a percentage of people – I think its around 10-15% who do well with it. We are a diverse group! What worked with you?
Cort – my challenge appears to be ANS issues and in particular very extreme (in the sense that I am very, very sensitive to minor changes in temp) temperature regulation issues. Once I understood that I was able to exercise to some extent. I have to wear very light “breathable” clothing, be in a cool environment (being in the ocean is great as long as not too cold – here in FL I can now start going back in on warm days) early evening with ocean breeze, take cool showers afterward, etc.
There may be more going on but unlike with others I think it’s possible exercise in itself may not be a problem for me. I definitely have “inflammatory” issues but exercise doesn’t seem to be driving them. In fact for me it seems to go the other way in that when I “feel” inflammation is low than I am better able to exercise.
I have seen Shoemaker and fit his patient base to a T except I don’t have the bad genetic profile. I never seem to fit anybody’s “profile” very well. But I think that’s the challenge many of us face: MDs way too quick throwing us into an inappropriate silo of illness.
In terms of exercise protocol, I am on my own so I can’t be much help more than likely. All I can say is build up slowly. I walked significantly before making an attempt at anything aerobic -Fitbit is great for motivation and tracking. Then I walked briskly, then I mixed it up, then some light jogging, then very short quick sprints, which is where I am at currently. I also am taking Creatine (a Shoemaker solution) and D-Ribose as part of my exercise regiment. I also think that Richs/Fred Davis’ folate and B12 protocol helps me as well but I can’t be positive yet.
I think the shocking thing for us are the extreme sensitivities that we all have. A couple of mine are: I have to sleep at 71 degrees or a bit lower or I don’t sleep well and I have to go to bed at 9:30. Any earlier is too much and much later and I dont’ seem to get any restorative sleep. No wonder we sound like crackpots!
Just to clarify, I think what I meant to say is that some of us may have more in common (pathophysiology wise) with those with other conditions such as ASD than with others who are currently labelled under the ME/CFS banner.
So you want to be lumped with those outside of what you’ve been diagnosed with and split from some of those that share your diagnosis? This convolution is why we need subsets and much better criteria. Why is this controversial? I don’t want be lumped with someone who finds a toxic drug like Ampligen helpful when it might be extremely harmful to me.
And I think it’s clear that many people don’t want to be told to partake in the exercise routine that I find helpful.
But what’s value of this diagnosis?
Mine went like this. I think you have fibromyalgia. I pointed out that (as were the ‘gold standard diagnostic criteria at the time) I didn’t have the classic tender points to which he responded – then its probably ME (later denied and re-labeled CFS).
Thing is it’s a complete wastebasket diagnosis for those who don’t neatly fit into any other of the little labels that medics like to yield!
What’s the value in ‘better’ criteria for a wastebasket condition? So the CCC and ICC pick out those that are more disabled? Of course they do because that’s how they are structured. Does that mean they are identifying something different of just those more severely affected with the same problem or perhaps further down the road?
Its a difficult circle to square. My personal perspective is to ignore labels and focus on the underlying pathology that probably manifests itself differently in each individual.
That’s why I prefer to ignore diagnostic labels and look at what’s common across conditions.
I don’t disagree. In fact, I agree: I want to be lumped with people that have similarly proven dysfunction regardless of label. I want to be split from those that have been given a wastebasket label.
I don’t like any of the “ME Criteria”. I think it’s all BS. What I want is acknowledgment based on what proven and accepted tests reveal not to be lumped together on the basis of vague and completely subjective assessments when it’s entirely unnecessary.
The problem is this: Dr. Komaroff and Dr. Light seemed to be saying on their MedScape video that all you need to do is a few tests, ask a few questions, eliminate a few possibilities, maybe a questionnaire or two and voila that’s enough to diagnose with some vague label like CFS. No other testing is needed. So of course what happens is the most people might know is that they have high EBV and HHV-6 with a few other symptoms. But that doesn’t tell anybody squat.
So my feeling is better criteria hopefully leads to better testing which may provide more clues as to dysfunction. It took me years to figure out that many of my problems were ANS related and not allergy/immune related – though I have those too. That is what “CFS” is: a label to put an end to root cause analysis.
I started teaching in 1971, and from that perspective one fact that surprised me about people with ME is the greatly increased proportion of people with autism in their families.
I also remember listening to Dr Betty Dowsett discussing the statistical correlation between the spread of polio and of CFS in, I think, New Zealand and Iceland. In both countries, where there had been outbreaks of one, there was little of the other. I wish I could find the appropriate data! Her suggestion was that perhaps people with ME would have been prone to polio. Vaccination prevented that, but perhaps not infection by others in the enterovirus group.
The hookworm stuff isn’t new either.
We are suffering from so many unfollowed leads.
In terms of the gut, I did a fecal transplant. Donor was fully screened for diseases and parasites. The fecal transplant didn’t make me any better. Did it make me worse? I don’t know either. Probably shouldn’t have done it though – but I tend to regret most treatments I do that I suspect may have caused me a decline.
Thanks Thomas. Did significant gastrointestinal issues lead you to try the transplant?
Cort,
Yes it did. I’ve had IBS for most of my life. Even before my acute onset of ME/CFS I constantly struggled with it. Even if I never got the ME/CFS I probably would have done the fecal transplant so either way it seemed like it was in my future. On paper the transplant helped me. My cdsa showed that it got rid of my candida and gave me a 3+ in lactobacillus (I have never had any lacto growth before it). Which is fine, except I don’t feel any better both cognitively or digestively. Who knows though, if I ever recover from this illness perhaps I will look back and see it as a positive treatment that assisted my recovery. But for now I just don’t feel that way. As we all know, looking good on paper doesn’t always equate into feeling good. My doctor says he can’t see how the transplant could have made me worse. Maybe he’s right.
Thanks…Can you say how much it was? I don’t have a clue…
Sorry are you referring to the cost of the procedure? I didnt do it in a specialized clinic like those in australia. More of a home as per a local hospital’s protocol. Under $500.
Also, Cort, in your experience have you heard of patients having pre-existing IBS then getting an acute onset of ME/CFS, recovering (or substantially improving) from the ME/CFS and going back to just having IBS? I’ve heard some ME specialists saying yes to this question but i was curious of your experience…
This is all very interesting. At nearly nine months pregnancy in 1976 with my second daughter, I was hospitalized with toxemia for five days in Orlando, FL. I ended up having a normal vaginal delivery but an extremely lengthy delivery process. When my daughter was 3 weeks old she did not awaken during the night for a feeding. Upon waking her, she was listless, rolled her eyes and had an odd urine smell. She also would not take the bottle. Now at 3 weeks of age all babies like to eat every few hours.
I immediately took her to the ER where she was dx’d with bacterial meningitis. This eats away at the brain and the spine, leaving little hope for a recovery. They had not seen a case survive under the age of 4 mths, and if they did they were physically and mentally impaired for life. The doctors gave her 24 hours to live. I had her baptized in the hospital while she lie in an incubator with an IV pinned into her scalp.
She lived. And is still alive at the age of 36. She developed poor vision at four years of age needing glasses but when hitting her teens the glasses had corrected her vision, no longer requiring eyewear. From the time she was born she had bowel problems which lasted throughout her life. As an adult she once again needed glasses not for an astigmatism but for farsightedness. As an adult she has had much fatigue, extreme trouble losing weight (although not obese at all), but also has had hypoglycemia. She refuses to be seen for CFS type issues by a physician as she is adamant about not wanting to know. She feels she just doesn’t need that DX and can I blame her? After having first hand knowledge of my CFS throughout the years? I have lived with her family in the winters when leaving the cold of MN. Her oldest son has ADD and youngest is just starting kindergarten next school year, but already needs glasses as well. I cannot help but wonder if this all ties in with my five day hospital stay in Orlando. I was approached by two women at the hospsital who had heard of my daughter’s survival, asking me to keep a diary on her for her first few years . The doctors said it was literally a miracle of God she had survived and was neither brain dead or paralyzed. Amazing Grace…..well, just something to really think about here isn’t it? Thanks for reading…any other stories similar to mine out there?
Doing research on the internet for a teenage daughter just diagnosed with ASD and having major CFS symptoms. This is the best article I’ve found that puts all the piece together and it’s seven years old! Where do I find an update? I also surprisingly have not found any doctors who are putting all these pieces together…