On Autism & Chronic Fatigue Syndrome

When I was in second grade, a little girl started calling me Weird One. I was elated. I felt that I had been knighted with some sort of public identity and it felt wonderful. I felt as though I belonged in some way and I hardly ever felt as though I belonged at all.

That same year, classmates pointed out to me that I stood strangely.  I had no idea.  Looking down at myself, I realized that my hands were drawn up as if holding dangling dust rags, poised to begin cleaning the house. Knees bent backward, stomach poking out much more than normal for an eight-year-old, more like a two-year-old. I had no idea my posture was this awkward until another child pointed it out to me. I made a point of monitoring my posture from then onward.

The year before, as a first grader, I couldn’t understand the game played the entire year where all the little boys and girls pretended they were boyfriend and girlfriend, a merry-go-round of who was currently “going out” with whom. I took stock of the situation quite seriously and determined that I was not actually romantically attracted to any of the boys.  I decided therefore that I must be gay, barely knowing what gay was, but knowing it had something to do with not being attracted to the opposite sex.

It’s not that I was gay; I grew up to marry a man. But I couldn’t naturally understand the games that other kids played any more than I would naturally have been aware of standing abnormally.

My parents pushed me to call other children on the phone to arrange play dates, but I was terrified. I was happy enough playing by myself, working on intricate projects. The same year I was given the name Weird One, I was intently focused on projects like creating mosaics made out of pastel-colored foil candy wrappers, cutting and painstakingly gluing them into designs of lilies, the warm and cool colors arranged to give the impression of three-dimensionality.

It would take me nearly 30 more years to realize I was autistic. I had the intuition as a teenager that if I had a male child, he would likely be autistic.  But not me, I was just autism-y or autism-ish.

Instead, I reached the conclusion that I was not just not good at things, things that other adults took for granted, things that I should be good at, but was not. I bumbled from one jarring social failure to the next not knowing why I could not stop myself from being inadvertently off-putting or offensive to people or uttering what would turn out to be strange or inappropriate comments.

I didn’t understand why it was so hard for me to make friends, to be tidy and organized, to pay bills on time or generally to look after myself in a fully adult fashion. In my thirties, I was lost figuring out how to dress professionally for my first real job.

I followed a set of rules that involved not discussing other people’s closely held beliefs, being extremely careful when talking about the death or serious illness of loved ones, never talking about sex and above all never telling the truth about my thoughts and feelings because too many times I found out that these were not shared by other people. When in doubt, my rule was to say nothing. I am in doubt a lot and people almost invariably describe me as quiet.

Because I am female, because I had no speech problems as a child, because I did not line up objects or fixate on spinning things or train schedules, it did not occur to me that I could be actually autistic. It did not occur to my family, my teachers, or my psychologists. Instead, I was diagnosed as shy, anxious, and depressed. My family largely agreed that I was simply, and frustratingly, just not good at things that I should be good at.

But perhaps I was a textbook autistic girl. Like many autistic girls, I was a serious reader. I spent much of my time outside school reading. In retrospect, fiction was a social place for me, but one that was safe. When you read books and you don’t understand why the characters are acting as they are, you can flip back a few pages, review and think about it a while. No one will make fun of you.

Also, like many autistic girls, I was very fond of and interested in animals, who make for safe and non-judgmental companions. As an adult, if I enter a room full of people and one dog, I am drawn to the dog like a magnet.

As a baby, my parents tell me I was extremely focused on my ongoing project of spying lint balls from afar and crawling across the floor to approach them, carefully licking my finger, dabbing the lint ball and placing it in my mouth. As a toddler, I drew my cat, with her characteristic grey mask, literally hundreds and hundreds of times.

I suspect that these behaviors were early symptoms of a tendency to a narrow hyper-focus that manifested in later years as successive special interests. I have had too many special interests to count: drawing, Dalmatian dogs, porcelain dolls, horses & ponies, American Girl dolls, the Amish, Amish quilts, Hawaiian quilts, Hasidic Jews, Weddings, recipes, handmade fine jewelry, all things biology and medicine, and so on. Special interests are like a place to go to, a place where I have felt the best, the happiest, the calmest and the most normal.

As an adult, if you talked to me for a while, you might quickly identify me as quirky, but you would probably not guess that I have echolalia, a symptom of autism where you repeat phrases heard elsewhere or just sounds, like meows. It’s not something I do in public any more than I flap my hands in public. But alone, or with just my husband, especially in the early morning hours or late in the evening, when my brain is partially offline, you might catch me meowing or slowing saying nonsensical strings of words, savoring the sounds of each syllable: ”Furstenberg, Dalit, Chicago, Twain, tailwind, ranunculus, tango, quail, robot…”

You would not guess that I flap my hands in private when upset. You would also not guess that I sometimes have trouble recognizing faces or realizing when I’ve been asked a question or knowing when it is my turn to speak in a conversation. You would not guess that my husband explains things to me like if you want to have a constructive, pleasant conversation with someone you disagree with, make sure to begin the conversation stating the things that you do agree with them about.

When I was diagnosed at thirty-five, I was not surprised. I had figured it out before the psychologist did. But I cried all the way home. I had always thought I would be able to fix myself.

At age 10, when I had finally become quite depressed, my father handed me the self-help books he had acquired it to help him cope with the death of my older sister from leukemia. I dutifully made tapes of myself talking to my inner child, desperate to escape the awful feelings I felt except when engrossed books, pets, or obsessing over Dalmatians or other intense interests. But the self-help didn’t work.

As I grew older, I saw a child psychologist, then an adolescent psychologist, then adult psychologists. Most I thought were excellent. None helped me escape my anxiety and depression. None was able to help me feel comfortable or competent in the world, because unbeknownst to us all, depression was not actually the root problem.

Currently, men or boys appear to be far more likely to be autistic, but recent research suggests that we don’t recognize when girls and women are autistic.  We don’t yet have an accurate count of autistic girls and so we can’t really say yet what the ratio of boys to girls is. Autism may be far more common in girls and women than we realize.

Autistic girls look different than autistic boys. Girls with autism are much less likely to have boy-typical fixations like spinning objects and are more likely to have typical girl interests, but with an unusual intensity.  They may play with typical girl toys but may collect them, line them up, set them up in scenes, but not play with other kids in a way that uses back and forth pretending.

Autistic girls are also much more likely to be able to mask their symptoms by imitating neurotypical children in their early years, with symptoms only becoming more pronounced when they are not able to handle sophisticated social situations in adolescence.

A widely used test for detecting autism called the Autism Diagnostic Observation Schedule (ADOS) misses significantly more girls than boys because it relies on a boy-typical model of autism. Girls score lower on the measures for restricted interests and repetitive behaviors, despite autistic boys and girls otherwise having equal social difficulties.

Because we think of autism as a developmental disorder, you might expect that I would never get better, except perhaps by being trained in developing social skills and other behavioral therapies designed to help me cope.

But rather than being static or improving only with social training, the course of my autism is quite variable. In my life, I have had times of feeling something close to neurotypical and I have had huge increases in autistic symptoms at other times. When I have a fever, I become very cheerful, confident and talkative. 83% of autistic children have a similar reduction in autistic symptoms in response to fever.

John Rodakis of the N of One Foundation, which supports breakthrough research in autism, started his foundation after noticing that his autistic son improved markedly after a course of antibiotics. I improve after antibiotics as well.

I have mold allergies and was very autistic during college when I lived in a city with high mold allergen counts. In fact, in St. Louis where I went to college, I would decompensate in late August each year as the mold levels began their seasonal rise. As fall progressed, I became scarcely able to put sentences together to communicate with people. Any friendships I was able to start to establish in the summer when mold levels were lower, would unravel in the fall when I descended into deeper strangeness.

A variable course to autism, at least in certain subsets of autistic individuals may actually be par for the course.

Autistic burnout is a concept in the autistic community that refers to a loss of function in multiple areas. This is not a clinically recognized phenomenon, but it is a well-known enough idea in the community that perhaps we should be listening to people with autism about this experience.

People often link autistic burnout to exerting too much effort attempting to appear normal, spending too much time in overstimulating situations or being exposed to other prolonged stresses. According to an infographic from the Autism Women’s Network, lethargy and exhaustion may accompany autistic burnout, as can losing the ability to speak, cognitive impairments, increased sensory hypersensitivity, and digestive problems. Autistic burnout generally entails becoming “more autistic.”

Autistic burnout is used interchangeably with “autistic regression” in the autistic community. A behavioral regression in the first few years of life often precedes an autism diagnosis and this type of autism is termed regressive autism. A child with regressive autism suddenly loses language and disconnects from the people around her.

I think of Cynthia Kim when I think about autistic regression in adults.  Cynthia Kim is a marvelous writer who kept a well-known blog called Musings of An Aspie about living as a woman with autism. It was beautifully written, one of the first blogs I found when I started considering that I might be autistic.

Sometime during perimenopause, the years of hormonal upheaval that occur prior to menopause, Cynthia began to lose her language ability and ultimately discontinued blogging in 2015. Cynthia herself linked these changes in her autism symptoms to changes in her hormonal state.

Calling autism a developmental disorder suggests that something went wrong a long time ago and that current symptoms are a result of that early neural deviation. A developmental disorder should be fairly static. Yet the course of autism with its ups and downs has more of the pattern of an illness.

Dr. Robert Naviaux at the University of California San Diego studies autism. He is an expert in the field of metabolomics. Dr. Naviaux’s work focuses on finding disease-specific patterns in all of the little molecules that are the ingredients and products of metabolic reactions in the body.

His research has found a distinctive metabolic pattern in autism that points towards an unending process of inflammation. The persistence of this process causes problems in pathways that affect systems all over the body.

Inflammation is an immune system response that starts when you injure yourself, when you have an infection when you encounter a toxin or even when you encounter emotionally stressful events. Inflammation is the beginning of a purposeful, protective process designed to end in healing and a return to normal function and health.

A cut on your hand, for example, would initially be surrounding by the swelling and redness of inflammation. Then as time passes, that would subside and other mechanisms would take over that clear away damaged cells and lay down new, healthy tissue. Your cut would close up and heal and the redness would be gone.

When you catch the flu, inflammation initially fights the infection but when the infection is gone, anti-inflammatory processes take over to return the body to a state of normalcy. When the state of normalcy is reached, you stop feeling sick and start feeling good again. You have healed from the infection.

It appears that, in autism, something is stopping the inflammatory process from ending so that the body never reaches the point of healing and never returns to normalcy. When this relentless inflammatory process begins very early in life, the developing brain, uniquely vulnerable to persistent inflammatory states, goes off track.

But perhaps the damage is not permanent. Dr. Naviaux has identified drug called suramin, an old drug used to treat African sleeping sickness, as a possible treatment to stop the ongoing inflammatory process and allow healing to proceed. In an animal model of autism, suramin not only reversed problems in numerous metabolic pathways known to be significant in autism, but it also normalized social behavior.

Parents of autistic children often wonder if a healthy, social version of their child hides somewhere within the disabled child they care for on a day to day basis. This may very well be the case.

Dr. Naviaux has conducted one small study of suramin in a group of autistic boys and another study is planned. The first study is too small to have bullet-proof confidence in the efficacy of the drug or to be able to reliably discover all possible side effects, but the parents’ evaluations of their children’s response to suramin were remarkable.

One parent likened their child to the patients in the Robin Williams movie Awakenings, in which catatonic patients rendered unresponsive to the world by brain damage were temporarily awakened by a drug. After decades of mutism and stillness, these “ghost”-like patients awakened to be their former selves, talking, laughing and interacting with others.

One child, whose parents described him as “locked in by his disease”, emerged for a few weeks. He became cheerful and “at ease in his own skin”, started trying new foods, speaking in whole sentences for the very first time, trying to make his therapist laugh and requesting to spend time with his father. Weeks later, this child returned to his baseline state.

Another parent said, “We have tried every new treatment out there for over 10 years. Nothing has come close to all the changes in language and social interaction and new interests that we saw after suramin. We saw our son advance almost three years in development in just six weeks.”

Autism is not the only illness with this pattern of prolonged inflammation and a failure to return to normalcy. One of these other illnesses is a poorly understood, underfunded, often belittled illness called chronic fatigue syndrome (CFS).  In other parts of the world, outside of the United States, the same syndrome is called Myalgic Encephalomyelitis (ME). Many researchers refer to the syndrome as ME/CFS.

ME/CFS entails a sudden or gradual onset of severe, unrelenting fatigue with a tendency to markedly worsen with normal amounts of activity. For a majority of people with ME/CFS,  the illness starts with an infectious illness of some sort, but then the person never recovers.

Patients experience flu-like malaise, widespread pain, difficulty sleeping, multiple allergies, sensitivity to light and sound, and cognitive problems. There is no treatment currently.

The film Unrest, created by ME/CFS patient Jen Brea, was nominated this year for an Oscar for best documentary.  It vividly illustrates the plight of people with ME. 25% of sufferers are bedbound or housebound and 75% are unable to work. Estimates suggest that 15-35 million people across the globe have ME/CFS.

For decades the dominant explanation for ME/CFS has been that it is not real and exists primarily in the minds of patients.  More recently, the findings of numerous researchers have pointed to clear biological abnormalities in the illness.

Dr. Naviaux works with the Open Medicine Foundation to research ME/CFS. The OMF is a foundation dedicated to finding treatment for the illness as quickly as possible. One of the founders of the OMF foundation, Ron Davis, is a researcher at Stanford University. His son is severely affected with ME/CFS and has been bedbound for years.

According to Dr. Naviaux’s findings, the pattern of metabolic dysfunction in ME/CFS patients is very similar to that found in autistic people. They are on the same spectrum of relentless inflammation coupled with an inability proceed to a state of healing.

According to an article on the OMF foundation website: “Dr. Naviaux has encountered teenagers with ASD who develop ME/CFS, and adults with ME/CFS who develop autism-like symptoms of mutism, social withdrawal, sensory hypersensitivities, and OCD-like symptoms.”

When I was sixteen, I became ill with ME/CFS.  After an episode of apparent food poisoning and what was for me a profoundly stressful period of ambivalence about breaking up with a boyfriend, I suddenly stopped sleeping almost entirely. I became so sensitive to every smell, sound, fluctuation in temperature or hint of light that even when I could get to sleep, which was often not until four in the morning, I woke up within an hour.

I was unable to stand or hold myself upright for an extended period of time. I dropped every class I didn’t need to graduate high school and spent my free periods laying around in hallways or in empty classrooms.

Beset with strange symptoms, I developed hot flashes and flushing. While at school, my cheeks, nose, and ears would flush bright red. I spent class time laying my hot cheeks on the cool desks, first one side and then the other.

I began to sweat profusely, like raindrops rolling down my sides. I once lost control of my bladder at school. I developed a slight stutter, severe anxiety and became chronically, unbearably irritable. My social function went downhill fast.

At the same time, like many ME/CFS patients, I developed something resembling dementia.  I would forget what I was saying in the middle of a sentence.  Rarely would I remember why I had walked into a particular room.  I would mix up left and right, positive and negative numbers. Adding, subtracting, or focusing on anything was painful or impossible. My memory for events was shot. I barely remember any of high school or the years afterward.

I had become disabled.

Many parents of autistic children will recognize my ME/CFS symptoms of red cheeks, extreme difficulties with sleep, anxiety, irritability and sensory hypersensitivity from what they see in their own children. Perhaps what happened to me at sixteen is similar to what happens to some children as toddlers when they develop regressive autism.

If ME/CFS and autism share a mechanistic link, then at least certain subsets of people with autism stand on a precipice of developing ME/CFS.  I suspect that many more who do not get outright ME/CFS experience milder symptoms of the same sort, like unusual fatigue or widespread pain. It is easy for me to find other autistic women with these symptoms and I think the reason why we have not seen the connection clearly before now is the under-diagnosis of autism in females and the under-appreciation of ME/CFS as a physical illness.

When I first got sick at sixteen, I thought by the time I was twenty-five, that there would be much progress in research about my illness. Twenty-five seemed very old to me at sixteen. There was not any progress as far as I could see. It became clear to me by the time I was in my early twenties that there would be no one to help me. I was on my own. I clung to the idea that this was not actually the real me and this was not actually my real life. This could not be my real life because it was too awful.

I began to experiment, as many people enduring ME/CFS do. I began trying various supplements and persuading doctors to let me try harmless drugs, even if they were not indicated for ME/CFS, because there was nothing out there indicated for ME/CFS.  I found many things that could get me through several months at a time and some things that helped in the long term, but not enough to give a good quality of life or help me function normally.

In my mid-thirties, after my autism diagnosis, I found something that gave me a good quality of life and helped permanently. It was high doses of the B vitamin biotin. My life before biotin was quite different from my life after biotin.

I had read about it as a new treatment for progressive multiple sclerosis. The severe fatigue and widespread pain of MS are very similar to that found in ME/CFS. This year at the 2018 Symposium for the Open Medicine Foundation, Ron Davis mentioned how alike the two illnesses are. In fact, he wonders if ME/CFS might be a biological state that shares a mechanism with and may sometimes precede MS.

Biotin, even in high doses, was found to be safe and well tolerated in these MS patients. So I started with 100mg twice daily, less than the 300mg used in trials for MS.

A week in, my irritability was gone. I was free of the constant need to suppress and hide my anger every waking moment. With biotin, I was quickly and permanently relieved of it. My anxiety, loud like a freight train in my head and inescapable, was halved. I came back into the world of people as though I could “hear” them for the first time. I had a sort of peace I had never experienced before. I was able to become a good wife and a good employee. I could make friends. I did not become neurotypical, but I am much more neurotypical than I was.

You might wonder what it is like to go from more autistic to much less autistic. It was like I had been staring at a wall my whole life, struggling to peer through it, and then suddenly I took a modest step to the side and looked out a window for the first time. I was still me, just a slightly different version, a version with peace and clarity. Prior to the biotin, I had no idea that the window was even there, within reach.

I also gained energy and had a big reduction in the malaise that plagued me. I felt much less sick. For decades, I woke up hopeful that the current day would be different from all the preceding days, and every day, shortly after waking, I felt increasing nausea, a headache, pain in my upper back, and a feeling that was like a combination of a nasty viral infection and being hit over the head with a shovel.

Researchers studying biotin for MS think it may affect brain function by increasing the capacity for neurons to make energy and by having a generally neuroprotective effect. Energy production is a known issue in ME/CFS and in autism. Biotin acts as a cofactor for processes that create ingredients for cellular energy production.  Biotin also promotes the production of myelin, the nerve insulator in MS whose loss causes the characteristic neurological problems.

Research has shown that a biotin deficiency results in overall higher levels of inflammation, possibly by promoting the activity of one of the central inflammatory proteins in the body: NF-κB. Perhaps extra high levels of biotin suppress this protein.

A Greek study examining potential metabolic disorders in a sample of kids with autism found that twelve of them had signs of biotin deficiency. Biotin deficiency in the absence of a specific genetic mutation is extremely uncommon because biotin is recycled in the body by an enzyme called biotinidase. A biotinidase enzyme genetic mutation will typically lead to chronic biotin deficiency from an early age because of an inability to recycle biotin. Biotinidase deficiency has been associated with autism in case studies of individual children.

However, none of the children showed in the Greek study showed a deficiency in the biotinidase enzyme itself. The researchers did not know the cause of the apparent deficiency. Seven of these twelve children responded positively to a high dose of biotin.  The amount researchers used was lower than the amount used in the MS studies. One child became completely free of autism and went back to school but relapsed when taken off biotin.

Ron Davis of the OMF foundation says that his son Whitney, who has a severe case of ME/CFS, has a rare sort of biotin deficiency.

I don’t know how many people with ME/CFS and/or autism would be positively affected by high dose biotin. I also don’t know if one of the other supplements and medications I was already taking allows biotin to work for me in the way that it does. But the difference in my quality of life is undeniable with biotin. Missing a dose brought back all of my symptoms in full force.

Biotin deficiency can result in seborrheic dermatitis, an oily, flaky, irritated skin condition. When I was a teenager, instead of developing acne, I developed seborrheic dermatitis on my face. I also developed a severe allergic reaction to nickel as a teenager that caused extreme eczema on the palms of my hands and soles of my feet.  In an animal study from 2009, biotin deficiency promoted nickel allergy and biotin supplementation suppressed it.

Much seems to be unknown about biotin. Biotin is generally regarded as harmless by medicine and as a vitamin that promotes hair growth by the general public.  We know basic things about its function, but is unclear, for example, how it might be possible that biotin could be used up at a rate faster than normal or if unknown factors could inhibit biotin recycling in the body, situations that would explain how children in the Greek study could have normal biotinidase, but with an apparent functional biotin deficiency.

ME/CFS patients who are familiar with Dr. Naviaux’s work are eagerly awaiting a suramin trial for ME/CFS and he is working towards organizing one. If suramin is successful and is approved by the U.S. Food and Drug Administration, it would be the very first FDA approved treatment for ME/CFS.

At least two other trials for new medical treatments for ME/CFS are in the works. Cortene is a drug being studied in the hopes it will down-regulate a physiologically hyperactive stress response found in ME/CFS.

Another planned study by Dr. Nancy Klimas who runs the Institute For Neuroimmune Medicine at Nova Southeastern University in Florida, will examine whether an anti-inflammatory drug called Enbrel and a stress hormone-blocking drug called mifepristone when given one right after the other will reset both the immune system and the stress system in patients at the same time. The advanced computer modeling at her center suggests this may be successful and may even result in a return to normal health without further treatment. The treatment has worked in an animal model of Gulf War Illness, an illness that overlaps symptomatically with ME/CFS.

I suspect that these treatments are also worth exploring for at least some types of autism.

Many people with autism object to thinking of themselves as having a disorder in need of treatment. With the growth of the Neurodiversity Movement in autism, a lot of people in the autism community are calling for a recognition that autism is part of a natural, normal variation in human brain wiring. They advocate that those who have autism should be treated with acceptance and respect and should not be pathologized.

Some of the motivation underpinning the movement is a reaction to therapies like Applied Behavioral Analysis (ABA) which attempts to incentivize the learning of language and social skills and aims to suppress autistic behaviors like hand flapping.  ABA is the most common therapy for autism.

Some autistic adults treated with ABA as children criticize the therapy as misguided and sometimes abusive. One criticism of therapy is that it does not fundamentally render autistic people less autistic, but only trains them to act more neurotypical and has caused treatment recipients to feel more ashamed about being autistic.

Many autistic people are publicly taking pride in being autistic and in the gifts and the unique ways of thinking that often accompany autism.  This is a good thing.

For me, recovery from autism has not meant that I have lost my gifts or unique ways of thinking.  In fact, I have kept all of these but have greatly diminished the aspects of autism that made me miserable. I can now use the gifts that I do have more effectively.

Prior to a partial recovery, I could not have written a long article like this.  I could intake information and find patterns in it, but it was much more difficult for me to “output” information in a written or verbal format so that I could have other people understand my ideas. It would have been such a struggle that I would probably not have attempted it.

For me, being free of autism and illness is just being free. It is the freedom and the peace I have wanted my entire life. I will continue to work for that until I am completely free.

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By |2018-11-03T03:02:13+00:00October 29th, 2018|

50 Comments

  1. Aleks October 31, 2018 at 3:49 pm - Reply

    This is such a powerful write up of your experience. Thank you so much for this

    • Brooke Herrin November 2, 2018 at 11:57 pm - Reply

      Thank you for the kind comment, Aleks! 🙂

  2. cort johnson November 2, 2018 at 3:44 pm - Reply

    Wow. What a great way to start a website – first a personal introduction to autism which made it real for me for the first time, then the Naviaux autism/ME/CFS findings and a very interesting treatment recommendation that you discovered while researching progressive multiple sclerosis. That reminds me of Rachel’s ME/CFS Copaxone story (https://www.healthrising.org/forums/threads/a-chronic-fatigue-syndrome-pots-patient-responds-to-a-multiple-sclerosis-drug-what-does-it-mean.4028/) – all written so well :).

    I love the merging of the different diseases and look forward to more.

    • Brooke Herrin November 3, 2018 at 2:01 am - Reply

      Thanks so much, Cort! I had read Rachel’s Copaxone story with interest. I suspect that more than one of the drugs used in MS may be useful for possible brain inflammation issues in ME/CFS.

  3. Louise November 2, 2018 at 6:17 pm - Reply

    Thx u.. I’ll pass it on!

    • Brooke Herrin November 3, 2018 at 2:02 am - Reply

      Thank you! 🙂

  4. Fionn Fionnmhachain November 2, 2018 at 6:41 pm - Reply

    Thank you, Brooke, for saying a number of things I’ve struggled over the years to find words for. I developed ME at 17, was diagnosed autistic at 52, and have since realised that I have EDS and MCAS too. I’ve really struggled to understand and explain the waxing and waning of autism symptoms, especially at key stages such as puberty and menopause. I largely keep quiet about it – it’s hard enough for people to comprehend that someone who’s managed (at huge personal cost) to ‘pass for normal’ all these years is even autistic, let alone that it’s not a fixed state! I look forward to reading more of your writing as and when my energy permits.

    • Brooke Herrin November 3, 2018 at 3:01 am - Reply

      Thank you so much for commenting. It’s easy to feel alone, but my sense is that there are lots of us. I hope that by finding each other we can help the research world find answers for us. I added a subscribe button to the page if you would like to be emailed the posts as soon as I publish them. Thanks again and take care 🙂

  5. Forebearance November 2, 2018 at 8:39 pm - Reply

    Go Brooke! That was awesome!
    Would it be possible to use a larger font?
    Thank you so much!

    • Brooke Herrin November 3, 2018 at 3:05 am - Reply

      Thank you so much for that! I bumped the font up a notch. Let me know how that works. 🙂

      • Forebearance November 3, 2018 at 7:02 pm - Reply

        It’s better! Thank you. Could you bump it up one more notch?

        • MtnHarmony November 3, 2018 at 11:12 pm - Reply

          I am glad you bumped it up a notch but could use it a bit bigger myself 🙂 Regardless, thanks for the knowledge you shared.

          • Brooke Herrin November 4, 2018 at 3:17 am

            How does that work for you now?

        • Brooke Herrin November 4, 2018 at 3:17 am - Reply

          How is that now?

          • Forebearance November 6, 2018 at 11:58 pm

            Excellent! Thank you so much!

  6. Gail Williamson November 3, 2018 at 4:49 am - Reply

    Brooke, thank you for sharing your story here. Can I clarify your Biotin protocol? You take one 100 mg. pill two times a day? Do you take them every day? I’m so glad you’re being helped by this, kind of like you’re starting a new life! Once again, thank you for your beautiful story.

    • Brooke Herrin November 3, 2018 at 11:54 pm - Reply

      Hi Gail, the maximum amount of biotin you can find in a single pill is 10mg, so I take multiple tablets. I really have started a new life! And I am still hoping for things to get even better. Thank you so much for reading and commenting.

  7. Ally November 3, 2018 at 3:48 pm - Reply

    The fact I have Cfs/Me and four out of my eight children have been diagnosed with Autism- I find this extremely interesting!
    I too have noticed as my cfs becomes severe, I experience symptoms of sensory overload and more.. very similar to what my boys do.

    I would love to know more about this and be kept up to date.

    • Brooke Herrin November 3, 2018 at 11:51 pm - Reply

      Hi Ally, Thank you so much for your comments. That is so interesting about you and your kids. I am going to start doing some posts about people and families with Syndrome A. Feel free to reach out to me by email if you would like to participate. If you would like to subscribe to have future posts sent to you, just fill out the subscribe form at the bottom of the post.

  8. Jibs November 4, 2018 at 3:58 am - Reply

    Wow great article. Thank you so much

  9. […] Link to ME Research story […]

  10. Venke Midtlien November 4, 2018 at 3:44 pm - Reply

    Thank you for sharing yor story❤️
    I have one question about your intake of Biotin. Do you mean 100 mg=100000.0 Mcg twice per day? It seems like a very big dose?

    Best regards from Norway😊

    • Brooke Herrin November 5, 2018 at 2:21 am - Reply

      It is a very big dose. And I don’t know if it is the right dose. It is just the dose that I take. I tried it after finding that 10mg twice a day made no difference but also did not cause side effects for me.

      • Venke Midtlien November 8, 2018 at 11:06 pm - Reply

        Thanks again😊

  11. Anna Bernard November 4, 2018 at 4:26 pm - Reply

    So glad I took the time to read this article on FB! It is my autistic son who is my concern. I know about the chronic inflammation and pay close attention to any information about how to slow or stop it. Suramin and biotin. I will research more and see how he feels about trying biotin. Like you, he is bright. He’s a college grad but he is so very isolated except for swim team. You are making a difference with one article. Thank you!

    • Brooke Herrin November 5, 2018 at 2:50 am - Reply

      Hi Anna, Thank you so much for taking the time to read and comment :-).

  12. Nikki Washington November 5, 2018 at 4:31 am - Reply

    Hi, this is a very intresting read. I’m also interested in this protocol for my 3 year old son! What dosage would you recommend for a toddler?

    • Brooke Herrin November 6, 2018 at 2:50 am - Reply

      Hi Nikki, Since I am not a doctor, I can’t recommend other people take biotin at any particular dose. I really only know what has worked for me. But you could maybe talk to your pediatrician for a recommendation?

  13. Cybelle November 5, 2018 at 6:56 am - Reply

    Fascinating article!

  14. Aoife November 5, 2018 at 10:22 am - Reply

    Hi Brooke, I want to thank you so much for this article. You have addressed so many aspects of ASD that I have struggled with. My daughter has autism. To me it is a medical illness she’s suffering from, I can see her in a constant cycle of illness that isn’t caused by a behavioural delay. With antibiotics she improves enormously and is practically symptom free. I have no problem with her ASD quirks in fact I adore then, she is one in a million. But I can’t bare the exhaustion, ear infections, irritability and her sensory overloads when she’s not well. This I have to cure, not the ASD, this is the problem. We’ve been working closely with a herbalist and have managed to bring the infections to a halt and she has made so much progress recently. I will mention biotin to her at our next appointment. Thanks again.

  15. Aidan November 5, 2018 at 3:50 pm - Reply

    What type of rare Biotin deficiency does Ron Davis’s Son suppose to have? Are his thiamine levels Normal?

  16. Kathy Albright November 5, 2018 at 4:21 pm - Reply

    This article is akin to revelatory! My grandson is autistic and his mother likely is too and after reading your story, you’ve confirmed my suspicions about myself. i cannot thank you enough for your simple, comprehensive, concise and clear writing style! Thank you so, so much! Keep communicating! You are helping!

    • Brooke Herrin November 6, 2018 at 2:48 am - Reply

      Thank you, Kathy!

  17. Forebearance November 7, 2018 at 12:10 am - Reply

    I would agree that when my ME/CFS is worse, I feel more autism-y. I get withdrawn, and uncomfortable in social situations.

    I’ve been experimenting with larger doses of biotin since reading this. A standard dose of 35mcg didn’t do anythinng noticeable for me.
    So I tried 5 mg, and that felt okay. It seemed to make me less tired and sore.
    10 mg was too much for me. It made me headachey.
    15 mg was way too much for me. It stressed out my liver.

    So it looks like 5 mg may be the right dose for me. That’s just one person’s experience.

    I read some people with MS talking about high dose biotin and some of them were saying it gave them headaches and heartburn. It makes me really sad that they would continue taking a supplement at that dose when their bodies are giving them clear signals that it’s an overdose. I wish they would listen to their bodies!

    One cool thing about taking what is still a really large dose of biotin compared to the standard dose is that it allows me to tolerate Vitamin B5. And I really needed Vit B5!
    So thank you, Brooke. Your blog is helping me already.

    • Forebearance November 7, 2018 at 11:20 pm - Reply

      Oh man, I was wrong! 5 mg is WAY too much for me for a daily maintenance dose of biotin.
      It looks like I may need something much less, like maybe around 100 – 300 mcg. I guess I am not one of the people who need a really large dose of biotin.

      But I am still really happy for you and for Whitney, that you found out you needed it and it really helps! Wouldn’t it be great if we could all have personalized medicine?

      • Brooke Herrin November 9, 2018 at 2:22 am - Reply

        Sorry it did not help you.:( Hopefully we will all have effective treatment before too long. It seems like that is the way with us ME/CFS folks. We have really different responses to things. I get really sick with vitamin D, which helps so many people feel better. I do feel worse if I take more that 10mg/day biotin, so dose definitely has something to do with it for me. To clarify, I don’t know that Whitney is taking any biotin at all or ever has. I had just read that Ron Davis had said that he had a rare biotin deficiency in an ME Action article.

        • Forebearance November 9, 2018 at 2:46 am - Reply

          I hear you about the vitamin D. I can only tolerate a little bit of that.
          A while ago I seem to remember Ron Davis saying that his son was brought back from the brink of death by taking something, and I think it was a B vitamin. So I was using that memory in my assumption.

          • Brooke Herrin November 10, 2018 at 5:02 am

            I had not heard that! So interesting. If you can remember where you heard that, I would love to know. I think that while vitamin D makes a lot of people feel better, my sense is that we have an unusual amount of people in the ME/CFS community that unusually bad with vitamin D. I wonder if it has to do with an existing issue with calcium regulation.

        • Forebearance November 10, 2018 at 11:48 pm - Reply

          I think I heard Dr. Davis saying that tidmit about his son as an aside in one of his videos. It may have even been at last year’s OMF conference.
          Yes, I’ve heard other people with ME/CFS talking about not being able to take large amounts of Vit D. That’s a good question whether we have some kind of (genetic? )issue or something.

          • Brooke Herrin November 20, 2018 at 12:36 am

            I will look for that video! I think that vitamin D alters calcium regulation and may slightly stimulate the immune system. Neurotoxicity has a lot to with intracellular calcium levels and we probably have some neurotoxicity going on already.

  18. Wendy November 12, 2018 at 7:07 pm - Reply

    Thank you for this article! My husband’s sister developed CFS and often was described as having MS symptoms at her worst. After having a child of my own with autism, I see at autistic behavior at times as well.
    Interesting that the have been discoveries about the interconnections of these illnesses.
    By subscribing to your posts, it’s it possible to get updates on the drugs and the use of biotin four help with those with autism? How can I find out the dosage of biotin to try with my 11 yr old daughter who has Down Syndrome and autism? I suspect a biotin deficiency because of the seborrheic dermatitis that you mention as a symptom of it, that she has always had on her scalp.

    • Brooke Herrin November 20, 2018 at 12:33 am - Reply

      Hi Wendy, I will certainly keep posting with whatever I know. Do you mean that your husband’s sister also shows signs of autism? I can’t recommend a particular dose of biotin to anyone, but perhaps you could talk to a pediatrician? Best wishes for all of you.

  19. Stefania Tottolo November 14, 2018 at 7:04 pm - Reply

    Grazie anche dall’Italia Brooke, ho letto usando il traduttore, il tuo articolo è molto interessante e scritto semplicemente così tutti possiamo capire i meccanismi che accomunano le patologie che hai nominato e gli studi che i ricercatori stanno portando avanti. Mia figlia ha 13 anni ed ha CFS/ME, la speranza che qualcosa possa darle beneficio è grande. Grazie ancora!

    • Brooke Herrin November 20, 2018 at 12:32 am - Reply

      Ho anche usato un traduttore. Spero che tua figlia si senta meglio molto presto. Sono stato male da molto tempo e non sono mai stato più ottimista.

  20. John Thompson November 19, 2018 at 10:58 pm - Reply

    What about the possibility that the low grade but chronic inflammation is due to a bacterial blood infection that the body does not create antibodies to fight directly instead trying to burn out the bacteria with inflammation.
    This inflammation makes the nerves much more sensitive to stimuli resulting in chronic pain.
    My own opinion would point to Streptococcus B bacterial infections such as impetigo and (later) gingivitis, the former being a common childhood infection often seen in toddlers. Is it just a coincidence that autism is often identified around two years old?
    Reducing the bacterial load may improve the symptoms, however I cannot see a possible link with Biotin acting as an antibacterial agent.

    • Brooke Herrin November 20, 2018 at 12:29 am - Reply

      Hi John, Thanks for the comment. You might be interested in reading more of Dr. Naviaux’s work if you are interested in chronic low grade inflammation. https://www.ncbi.nlm.nih.gov/pubmed/23981537 I doubt that biotin is working in an antibacterial way. I suspect it may be more in the arena of energy production, cGMP and/or inflammation.

  21. Andrew January 10, 2019 at 9:47 pm - Reply

    Oh man. This feels like reading about my own life!
    I’m a dude, so that bits different 🙂 but the swings between being ‘sort of normal’ to socially withdrawn with problems (more like a blockage of some sort) communicating and expressing myself, are something I’ve been trying to understand for the last 25 years since early high school.
    I always rate my best time in my life as the 3 months where all of a sudden I had the ability to talk to and get along with every person I met. This had happened to me at other periods in life, but never was my social ability so good for so long. It all ran out one afternoon at a pub, when my first sip of beer brought on a wave of fatigue. About two weeks later I was back to being withdrawn, etc. That was another thing I noticed, was that it was always a gradual transition downward, whereas I would end up ‘normal’ more suddenly.
    I’ve looked up bipolar a few times and I don’t fit that definition (type 1 nor type 2).
    I also notice that my brain seemed to work wetter when I’d get a cold virus. Which stand out to me every time I get one.
    CFS/ME for me took about 15 years to reach the moderate level. I’ve been off work and trying various remedies for the last 14 months. Have he aled my gut via diet, done GET twice (first time ended up housebound, second time learned valuable pacing and HR monitoring stuff), targeted gut microbiome modification and most recently used naturopathic means.
    Since I was put on a new supplement a few days ago, my brain is working the best it has in 18 months. My social skills are slowly resurfacing also. It contains chromium, alpha lipoic acid, cinnamon extracts, nigella sativa and biotin (1mg). After reading your blog, my money is on the biotin. Whatever the effective component is, it’s just incredible the difference and I’m so happy that I might get my life back.

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