How to Boost Your Immune System in Light of the Coronavirus Pandemic

Coronavirus and how to boost your immune system

The coronavirus (COVID-19) pandemic is having a profound effect on the entire world. Cities, states and even entire countries have been shut down in an effort to stop the spread of this invisible and sometimes deadly enemy. Since the world’s top medical experts are saying it will take at least a year to a year and a half to develop an effective coronavirus vaccine, we’re all left wondering what we can do in the meantime to protect ourselves and our families.

You might be surprised to learn that there are, in fact, a number of things you can do to protect yourself and help strengthen your body’s first line of defense — your immune system.

3 Key Ways to Boost Your Immune System

You’ve probably heard people describe our efforts to curb the coronavirus as a war. Actually that’s a pretty good metaphor — both for the actions being taken in our communities and for how your own individual body is fighting to keep you healthy.

When a foreign invader like the coronavirus tries to attack your body, your immune system goes on full alert, gathers its forces and mounts an attack on the invading virus. The stronger your immune system is, the better chance it has of killing the virus before it can cause significant damage.

1. How Sleep Supports Your Immune System

One of the best things you can do to make sure your immune army is in tip-top fighting shape is to make sure you’re getting plenty of sleep. While you’re sleeping is when your body both produces and releases cytokines, a type of small protein that works with your immune system to target infection and inflammation. Conversely, when you don’t get enough sleep, your cytokine army gets depleted and the order to go to battle is not given.

Another group of soldiers in your immune system’s army, natural killer cells (NK cells), act as sentries. They are a type of white blood cell that recognizes and rejects viruses. A 1994 study found that when people were deprived of four hours of sleep for just one night, NK cell activity was reduced by 72%. That’s a shocking number and underscores the importance of getting adequate sleep every single night. Although this part of the study was somewhat scary, another aspect of the study brought more encouraging news. After getting a full night’s sleep the following night, the participants’ NK cell activity returned to baseline.

How Much Sleep Do You Need?

You may be wondering just how much sleep you need to keep your immune system functioning optimally. A 2015 study published in Sleep Health reviewed 11 years of medical and scientific research on sleep duration and the related health consequences. After analyzing the data, the National Sleep Foundation recommended the following appropriate sleep ranges for individuals based on age.

Age Range

Hours of Sleep

Newborns (0-3 months)

14-17 hours

Infants (4-11 months)

12-13 hours

Toddlers (1-2 years)

11-14 hours

Preschoolers (3-5 years)

10-13 hours

School-age Children (6-13 years)

9-11 hours

Teenagers (14-17 years)

8-10 hours

Younger adults (18-25 years)

7-9 hours

Adults (26-64 years)

7-9 hours

Older adults (65+ years)

7-8 hours

The National Sleep Foundation does note that the amount of sleep needed for any given individual may vary based on things like health issues and risk factors. If you have a chronic illness or a compromised immune system, you may require more sleep than the average person in your age group.

Of course, since one symptom of many chronic illnesses is an inability to sleep well, you may be wondering what you’re supposed to do. There is no one answer that works for everyone, but here are a few articles that may help you find a solution that is right for you.

2. Foods That Nourish and Strengthen Your Immune System

In order to be in top fighting condition, an army needs to be well nourished. Your immune army is no different. Eating foods that are rich in vitamins, minerals and antioxidants will help keep your immune system in its best fighting form.

Foods to Eat

Sadly over the past few decades, for many of us, eating a home-cooked meal has come to be a rare treat rather than a normal daily occurrence. As our lives have gotten busier and more complicated, we’ve turned to eating out or picking up fast food rather than cooking nutritious meals ourselves. But now that we’re being told to stay home and shelter in place due to the coronavirus, it’s a perfect time to dust off those pots and pans and focus on feeding our bodies healthy foods that strengthen our immune systems.

The following nutrient-rich foods can go a long way toward helping support your immune system:

  • Fruits – Apples, berries, citrus fruits, kiwi, melons and papaya

  • Vegetables – Bell peppers, broccoli, cauliflower, kale, mushrooms, spinach and sweet potatoes

  • Proteins – Beef, eggs, fish, legumes, poultry and yogurt

  • Grains – Brown rice, buckwheat, farro, oats and quinoa (stick with whole grains)

  • Nuts – Almonds, Brazil nuts, macadamia nuts, pistachios and walnuts

  • Seeds – Chia seeds, flax seeds and sunflower seeds

  • Fats – Avocados, butter (preferably grass-fed), coconut oil and olive oil

  • Herbs / Spices – Black pepper, cinnamon, garlic and ginger

  • Beverages – Coconut water, green tea, kombucha tea, kefir and water (purified or spring)

Foods to Avoid

As important as it is to eat nutritious whole foods, it’s equally important to avoid eating a lot of processed foods that are full of additives, preservatives, sugars and/or artificial sweeteners. All of these ingredients can take a serious toll on your health in general and specifically on your immune system’s ability to function at its best.

Here are some examples of food categories that should be limited or avoided altogether to support a healthy immune system:

  • Processed Foods – Prepackaged foods including mixes, frozen meals, canned foods, lunchmeat / hot dogs and fast food
  • Refined Carbs – Chips, crackers, pasta and white bread
  • High Sugar Foods / Beverages – If sugar or another sweetener is listed as one of the first two or three ingredients, it should be avoided. Some examples include: sweetened cereals, sodas, sports drinks and energy drinks.

3. Supplements That Help Boost Your Immune System

As much as we’d like to think that we can get all of the nutrition we need from our food, the fact is that most of us are deficient in one or more of the nutrients necessary to maintain a strong immune system. Now more than ever, it’s important to make sure we’re giving our immune army every weapon possible to fight off this coronavirus enemy.

Following are some immune system-supporting supplements to consider:

  • Vitamin C – Vitamin C is at the top of most lists when it comes to immune system support. It’s a powerful antioxidant that protects your cells from harmful free radicals and helps your white blood cells protect you from invading pathogens.
  • Zinc – Zinc plays an important role in immune cell development and communication as well as your body’s inflammatory response.
  • Vitamin D3 – Vitamin D3 boosts your white blood cells’ ability to fight off invaders and helps reduce inflammation. A 2011 article in the Journal of Investigative Medicine noted that a vitamin D deficiency was associated with an increased susceptibility to infection. And in 2009, the National Institutes of Health reported on a study that associated low vitamin D levels with colds and flu. They said that “vitamin D may play a role in helping the immune system ward off respiratory diseases like the common cold.”
  • ZMA – ZMA is a synergistic blend of zinc, magnesium and vitamin B6. In addition to the fact that each of these nutrients plays an important role in immune system support, the blend of all three is particularly good at promoting the restful, restorative sleep that is so essential to keeping your immune army strong and ready to fight.
  • Guaifenesin – Guaifenesin has been described as “the first level of immune defense” because it helps your mucus membranes do what they’re supposed to do — wash away invading pathogens and allergens. As a powerful expectorant, guaifenesin helps loosen and liquefy mucus, then expels it from the body by coughing.

Staying Safe

Of course, the best case scenario for any army is not to be attacked in the first place. To that end, it’s important to follow the CDC guidelines on how to protect yourself and avoid being exposed to the coronavirus. However, there are no guarantees with such a highly infectious virus. Despite your best efforts, it’s possible that you may inadvertently come in contact with it. Therefore, the best thing you can do for yourself is to make sure your immune army is prepared and your immune system is as strong and healthy as possible.

May you be safe, be careful and be well.


Karen Lee Richards is ProHealth’s Editor-in-Chief. A fibromyalgia patient herself, she co-founded the nonprofit organization now known as the National Fibromyalgia Association (NFA) in 1997 and served as its vice-president for eight years. She was also the executive editor of Fibromyalgia AWARE magazine. After leaving the NFA, Karen served as the Guide to Fibromyalgia and Chronic Fatigue Syndrome for the New York Times website About.com, then worked for eight years as the Chronic Pain Health Guide for The HealthCentral Network before coming to ProHealth. To learn more about Karen, see “Meet Karen Lee Richards.


Resources: Continue reading “How to Boost Your Immune System in Light of the Coronavirus Pandemic”

Why the Fibromyalgia Body Resists Weight Loss and How to Fix It

Does the topic of weight loss make you cringe? Or, perhaps you’ve shed more tears over it than pounds. If you carry any excess weight on your body and if you’ve been diagnosed with fibromyalgia, it’s likely that you’ve tried many diets.

Did any of them work?

That’s a trick question. Of course, they didn’t work. Diets – by definition – are short-term, impractical dietary interventions. They have an expiration date. If they provide results at all, they’re temporary. Diets are not long-term solutions.

Dietary solutions that work, do so for a lifetime.

Practical and effective dietary solutions are lifestyle shifts. They’re designed around your special needs and circumstances. And, they shift and change as your body does. Your dietary needs will change as you age. That’s a natural progression.

But why is there such struggle now?

The unavoidable truth is that chronic illness adds a frustrating dimension to the weight loss puzzle.

How can we work within the limitations of chronic illness? What lifestyle shifts work for the compromised body?

In this article, I’ll share the reasons why those with chronic health challenges find it more difficult to lose weight. We’ll also uncover new discoveries and familiar tried-and-true practices that can help your body discover the balance it’s looking for.

My Own Weight Journey

I’m no newbie when it comes to struggles with weight. I’ve been both overweight and underweight. I’ve fought a tough battle to find an equilibrium. Other articles I’ve written share more details of my story. Suffice it to say that the subject has a strong presence in my past experience.

If I could go back a few decades and speak to my younger self, I’d have a lot to tell her. I’d also give her a swift kick in the patootie. I can see so clearly – with clarity that only age can provide – how my beliefs created, fostered, and even stimulated my weight issues. It would be great to have a cosmic do-over. I’d do so many things differently.

More on this later.

I’ve experienced many blessings too when it comes to my weight issues. One main benefit of my past struggle is a deep and abiding understanding of the subject. So much so, that I’m grateful to share my success strategies with the chronic illness clients within my inner circle. I understand their worries and frustrations and apply solutions tailor-made for them borne from my own education and experience.

So, what have I learned?

First off, it’s important to understand why the chronic illness body is compromised. Once this is understood, the connections to weight issues become obvious.

The Compromises of the Chronic Illness Body

While there are several key areas of compromise in the chronic illness body, here are four that we’ll discuss for our purpose today.

1. Inflammation

Whole body inflammation is often noted as the single most common contributor to chronic disease, including cancer.1 The overall implication of inflammation is that it creates widespread dysfunction in the body. Inflammation shows up in the intestines, muscles, tissues, and organs of the body creating systemic imbalances.

These conditions are part of a vicious cycle. They contribute to inflammation and in turn are worsened by inflammation. Here are just a few of the many health conditions related to inflammation.

  • Leaky gut
  • Food sensitivities
  • Fungal and Bacterial overgrowth
  • SIBO
  • IBS
  • Nutritional deficiencies
  • Lowered immune system

2. Autonomic Nervous System (ANS) Dysfunction

The autonomic nervous system is responsible for our stress response. It comes as no surprise that those with chronic illness have a heightened stress response. Stressful situations trigger the fight, flight, or freeze response and then the ANS becomes stuck in a loop of over-activity.

The following conditions are impacted by the ANS and are also affected by inflammation. Think of them each as having a cascade effect.

  • Thyroid dysfunction
  • Hormonal imbalances
  • Respiratory inhibition (taking short, shallow, breaths)
  • Slowed/sluggish digestion (from stress)
  • Sleep disturbances
  • Critical thinking impairments

3. Pharmaceutical and OTC Medication

Many medications prescribed specifically for fibromyalgia and other chronic health challenges have known side-effects related to unwanted weight gain.

Some of these medications destroy gut flora creating impaired digestion and impair mitochondria, the energy centers of the body.2 Others may stimulate appetite, slow the metabolism, cause fluid retention, and lessen tolerance for exercise.3

  • Antibiotics
  • Steroids
  • NSAIDS4 (contribute to ulcers and gastrointestinal problems)
  • Diabetes medications
  • Antidepressants
  • Blood pressure medications
  • Migraine medications
  • Beta-blocker medications
  • Antihistamines

4. Brain and Mindset

Your brain has a lot to do with your ability to lose or manage your ideal weight. Brain health is often impaired in those with chronic health conditions due to the inflammation issue. The gut is often called “the second brain” as they’re interconnected systems. So, when the gut is impaired, brain function is also.5

Your mindset and beliefs also have a deep impact on your body’s ability to lose weight or manage a healthy weight. In my personal example, I believed that after my first pregnancy, I’d never be the same. While the changes were actually quite minor, that’s not how I viewed myself. Following the advice in books and magazines, I dieted. In doing so, I effectively crippled my metabolism. Equally destructive were my negative thoughts.

There’s much more to say on this topic than time or space allows. Mindset and our beliefs play a large role in how our bodies resist or allow weight loss. For example, we may – at a nonconscious level – feel resistance to the term, weight loss. Losing something typically brings to mind a negative emotion. If we lose something we usually want to find it again or want it back.

From this point on, you may wish to change how you think of your weight. Rather than striving for weight loss, consider striving to release the weight instead.

The following conditions are some of the many issues related to this broad topic.

  • Cognitive impairment
  • Depression and other diagnosed mood disorders6
  • Eating behaviors including binging/cravings/emotional eating, etc.
  • Motivation and sense of hopefulness or hopelessness
  • Negativity, anxiety, fear, isolation, and self-judgment7
  • Inability to plan or see future goals

Now that we’ve highlighted ways that the chronic illness body is compromised, it’s clear that the conditions listed affect multiple systems of the body.

Systemic problems need to be solved by systemic solutions.

Applying Root Level Support for the Chronic Illness Body

As mentioned earlier, systemic problems have a cascade effect on the body. While they can multiply and expand into worsening your health, the good news is that the same effect can be applied in reverse. When healthy solutions are applied at a root level, the results also have a cascade effect. But this time, in a good way!

This means that small actions can have very big results.

The goal is to apply root-level solutions specifically chosen to reduce inflammation. When these solutions are layered one upon another, the results are amplified.

Here are three simple steps to get you started.

1. Simple Root-Level Food and Fluid Fixes

Let’s begin with the basics of eating and drinking. The solutions I propose are not only not complicated, they’re painfully simple. But that’s how healing works. The simplest solutions are often the ones most overlooked.

Are you properly hydrated on a consistent basis?

Setting basic standards of hydration helps to restore cognitive function as well as improve digestion. Drink adequate amounts of clean, filtered water that’s free from contaminants and heavy metals.

Your quantity requirements will vary. A basic equation used to estimate is to take your weight in pounds and convert to ounces (150 pounds = 150 ounces). Then divide by two and make that a goal to consume on a daily basis (150 ounces divided by two is 75 ounces). Of course you know your body better than anyone. This is just a broad guideline and your needs may be more than this estimate or less.

You may find it helpful to download this free hydration tip sheet. It can help you to consider how much to drink, and just as importantly, when to drink.

Next, What about supporting your body through nutrition?

Are the foods you eat most predominantly packaged and processed? Do you often consume meals from restaurants and takeout vendors? If so, your body may be lacking in vital micronutrients as well as a balance of macronutrients.

Make a point to include the basic macronutrients of healthy proteins, healthy fats, and carbohydrates (mainly sourced from vegetables and fruits).

Simply shifting your diet from processed foods to natural, whole, nutrient-dense, and fiber-rich foods can go a long way toward reducing whole body inflammation.

If you’d like more information on specifically adding nutrient-dense foods to your diet, look at these articles:

6 Ways Leafy Greens Pack a Powerful Healing Punch

Phytonutrients Fighting for Fibromyalgia Recovery

The Fibromyalgia Diet – Help! I don’t know what to eat

Why Paleo for Fibro?

2. Simple Root-Level Body Detoxification

The chronic illness body is affected (to a higher degree than the healthier public) by internal and external toxins. Chemicals in foods, the air we breathe, and in our surrounding environment can train the body to hold onto weight.

There are many detoxification programs available when it comes to the foods we eat, but what about our environment?

One of the best ways to detoxify the body is through body movement. It’s also one of the most underused solutions.

To clarify, I’m talking about moving the body in healthy ways within your own range of motion. I’m not referring to fitness programs geared to give you buns of steel or six-pack abs.

Unfortunately, many in the chronic illness community have been told that fitness is a yes or no thing. They’ve been told that some tolerate it and others don’t. Rather than this black or white approach, look for ways to make fitness activities work for you. Range of motion activities, such as restorative yoga, tai chi, and qigong can be particularly beneficial. These activities can even be adapted for those who are unable to stand.

Fitness has many more benefits than just body detoxification. It’s also proven to boost mood, strengthen muscles, improve posture, and improve digestion.

3. Simple Root-level Stress Management

Stress management can also be tackled at the root-level. The most fundamental way to calm the autonomic nervous system is through deep breathing.

Deep breathing patterns let the body know that “all is well.” In a calm and relaxed state, the body learns to release anxiety, fears, and yes, even weight.

Begin slowly and practice simple breathing exercises on a regular basis. For example, practice them when going to bed at night, and again first thing upon waking.

Simple Deep Breathing Exercise:

Get into a comfortable resting position and close your eyes.

  • Focus on breathing in and out slowly. In through your nose and out through your mouth.
  • Focus on the coolness of your incoming breath as it passes through the nostrils. Focus on the warmth of your outgoing breath as it passes through the mouth.
  • Focusing on the breath allows the mind to disengage from worrying thoughts.
  • Practice this for just a few minutes and notice the reduction in your feelings of anxiety and stress.

There are many other deep breathing exercises to try, so as you progress, add new ones to your repertoire. I love to combine my efforts. Try practicing deep breathing while you do restorative yoga or tai chi. Practice deep breathing while walking or stretching. Apply it to whatever physical activity works for you.

Deep breathing exercises are also helpful to add to prayer and meditation practices. Add deep breathing exercises to your existing habits and enjoy the benefits of maximized relaxation results.

Can Root-Level Solutions Really Work?

This isn’t earth-shattering news: there’s no quick fix to weight loss concerns.

You already knew that. It likely took years for chronic illness to take hold of your body and it’ll take time to address the underlying causes of your condition. But the efforts are well worth it.

The great news is that current research supports the notion that small improvements can magnify into big results.8 Like the magic of compound interest, small shifts in your diet and daily routine can compound into amazing accumulated shifts in your body.

The root-level lifestyle shifts mentioned in this article provide a great pathway to help your body heal. A body that feels relaxed, nourished, and safe no longer needs to hold on to pain and other chronic illness symptoms. An additional, and desirable, side effect, is the result of releasing weight.

Sometimes this happens without even being aware of it.

Don’t be surprised when you hear this from a clerk the next time you’re in a department store dressing room. “I’m sorry. I can see that the item you requested is too big for you. I’ll go look for something in a smaller size.”

One of the most beneficial and valuable gifts we can give to ourselves in this life: is allowing ourselves to be surprised! It is okay if life surprises you. It’s a good thing!”  C. JoyBell C.


Sue Ingebretson is becoming a most sought after symptom-relief expert in the fibromyalgia and chronic illness communities. She’s known for getting to the root of her client’s health challenges and delivering long-term results using a light-hearted approach without quick-fix remedies that only mask symptoms. You can find out more and contact Sue at www.RebuildingWellness.com.

Would you like to find out more about the effects of STRESS on your body? Download Sue’s free Is Stress Making You Sick? guide and discover your own Stress Profile by taking the surveys provided in this detailed 23-page report.

References: Continue reading “Why the Fibromyalgia Body Resists Weight Loss and How to Fix It”

Lipkin Brings Disease Busting Technology to ME/CFS

Reprinted with the kind permission of Simmaron Research and Cort Johnson.

Our biggest weapon in the battle against chronic fatigue syndrome (ME/CFS) has to be the almost dizzying emergence of new technologies being developed. ME/CFS may not have much money, but somehow it’s attracted several pioneers in the medical technology field.

Dr. Ian Lipkin

Ian Lipkin (Columbia), Ron Davis (Stanford), Gordon Broderick (Rochester), and Travis Craddock (Nova Southeastern) aren’t just using the latest technologies – they’re actually creating them. Lipkin, the Director of the Center for Infection and Immunity at Columbia University, and a longtime Simmaron Research Foundation collaborator, is internationally known for his ability to create new molecular diagnostic techniques.

Lipkin developed MassTag-PCR, the GreeneChip system, and was the first to use next generation sequencing technology to identify pathogens. The 1,500 or so pathogens Lipkin identified include the West Nile Virus, numerous tick-borne agents, Lujo virus, MERS-CoV, and Tilapia Lake Virus to name a few. He also played a critical role in battling the SARS epidemic in China.

Lipkin, who has worked with Dr. Dan Peterson for many years, has a long collaborative research history with ME/CFS. Since September 2017, Lipkin has been the Director for the Center for Solutions for ME/CFS (CfS for ME/CFS) at Columbia University funded by the NIH.

Mystery Disease Strikes Children

Lipkin made news recently with his discovery of the apparent cause of a puzzling and devastating disease mostly affecting children called acute flaccid myelitis (AFM). The way the disease develops bears some interesting similarities with ME/CFS.

Several striking bits of evidence suggest a pathogen might be involved. The bug is not new – it first showed up in 1962 – and usually causes nothing more than a respiratory infection  – but in rare cases (600 cases in the U.S. since 2014) it can be devastating.

A spike in AFM incidence in the U.S. in 2014 suggested a virus might have become more prominent.  The fact that most infections appear during late summer and fall as pathogens start to sweep the U.S., plus a CDC report which indicated that the disease almost always followed a respiratory infection, turned a big spotlight on pathogens.

Lastly, symptom onset was abrupt and the disease produced polio-like symptoms such as difficulty moving the eyes, drooping eyelids, facial droop, facial weakness, difficulty swallowing, slurred speech, sudden arm or leg weakness (paralysis). The difficulty breathing that caused some children to be placed on ventilators brought back memories of the iron lung which kept people with polio alive in the early 20th century.

With that the hunt was on for an enterovirus – the cause of polio and a sometimes conjectured cause of ME/CFS. Although attempts to snag the intruder in the cerebral spinal fluid proved fruitless, it wasn’t for lack of trying. The CDC created a task force (which included Avindra Nath, the lead investigator of the NIH intramural study on ME/CFS) and embarked on a cerebral spinal fluid (CSF) study that included over 500 people.

Lipkin Tries New Tack

Lipkin proposed a low viral load, a hit and run virus, and technical issues might be bollixing up the PCR search in AFM, and turned to a much more powerful new technology developed by his team called VirCapSeq-VERT, as well as the use of peptide arrays that looked for immunological responses to pathogens. (VirCapSeq-VERT with its ability to detect novel and mutated viruses is like PCR on steroids.)

The peptide arrays proved the trick. Lipkin found antibodies to EV peptides present in almost 80% of the study participants’ CSF, and zeroed in on a specific enterovirus called EV-D68.  Since then a separate study has confirmed his finding. Now some researchers are calling acute flaccid myelitis “the new polio“.

Lipkin on Acute Flaccid Myelitis

ME/CFS Next

The question now is whether Lipkin can do the same thing for ME/CFS. A VirScan analysis funded by Solve ME failed to produce results; however, that method may not have had the specificity needed to find the footprints of an infectious agent. Lipkin and his colleague Dr. Nischay Mishra are using the same Serochip method they used to solve AFM, to begin an intensive search for an immunological response to a pathogen (viruses, bacteria, endogenous retroviruses, fungi) in ME/CFS.

The Serochip will scan through up to 6 million peptides (small amino acid chains) in an attempt to uncover a hidden pathogen that has been, or still is, tweaking ME/CFS patients’ immune systems. The work could also uncover an autoimmune reaction.

ME/CFS with its multiple subsets is likely far more complex than AFM, but if Lipkin can find a distinct immune signature or more likely distinct immune signatures in ME/CFS, he might be able to break another mysterious, pathogen triggered disease wide open.

Lipkin and his team will begin testing the blood or spinal fluid of ME/CFS patients in early 2020.


About the Author: ProHealth is pleased to share information from Cort Johnson.  Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.

A Review of 2019’s Top Fibromyalgia Headlines and What They Mean for 2020

Fibromyalgia news headlines 2019

I spent most of 2019 spinning my wheels, and it feels like the fibromyalgia community, as a whole, was right there alongside me.

What do I mean by that? Put simply, there weren’t many major fibromyalgia headlines during 2019. Sure, there was lots of talk about new treatments and the potential causes of fibromyalgia, but at the close of last year, very little was actually accomplished.

But I don’t want to focus on the negative so I’ll reframe 2019 like this: It was a year of planning and preparation for the fibromyalgia community. Hopefully, the framework now has been laid for 2020 to be the year of manifestation! Let’s all hope!

But before 2020 gets too far along, let’s reflect back on what we learned (and didn’t learn) last year.

Hurry up and wait … for new fibromyalgia treatments

It’s been more than a decade since the U.S. Food and Drug Administration (FDA) approved Savella, the last pharmaceutical earmarked for fibromyalgia.

Over the years, multiple drug companies have announced plans to develop new fibromyalgia treatments, but none have made it to market yet. The waiting game continued during 2019. At least four new drugs are under development, but it’s anyone’s guess if or when any of those treatments will ultimately end up in patients’ hands.

Based on current timelines, it would be surprising if the FDA approves any new fibromyalgia drugs again this year, but there’s a small chance TNX-102, a sublingual version of cyclobenzaprine, may make it to market if the drug performs well in its latest phase III study.

Finally an accepted fibromyalgia blood test?

Last spring, Ohio State University announced researchers have developed a new blood test that can diagnose fibromyalgia and differentiate it from similar conditions. Lead researcher Kevin Hackshaw hopes the test will be available to patients within five years.

There are at least two fibromyalgia blood tests currently on the market – the FM/a test from EpicGenetics and an RNA-based test through iQuity – although neither test is widely used by physicians or recognized as a valid diagnostic tool by the American College of Rheumatology (ACR).

Misdiagnosis is a huge problem

Without a reliable blood test, doctors are supposed to use ACR guidelines to diagnose fibromyalgia. However, a National Data Bank for Rheumatic Diseases study published last February found not all physicians are following those diagnostic criteria.

Of 497 patients, only 24% met ACR guidelines for a true fibromyalgia diagnosis. Physicians failed to diagnose fibromyalgia in almost half of patients who met the criteria. Around 11% of patients were labeled with fibromyalgia by their physicians even though they did not meet the diagnostic criteria for that diagnosis.

This study supports a previous Canadian study, which suggested up to two-thirds of patients diagnosed with fibromyalgia may have actually been misdiagnosed.

The opioid war continues

Last year, the Centers for Disease Control and Prevention (CDC) finally admitted its opioid prescribing guideline is negatively impacting chronic pain patients. Since the guideline was released in 2016, thousands of patients have been forcibly tapered off prescription opioids and left with few options for managing their pain.

The guideline was intended to be voluntary and was only supposed to apply to primary care physicians, but federal agencies, states, insurers and many doctors adopted it as policy, much to the detriment of those who depend on opioids for pain management.

In an article from Pain News Network, Dr. Deborah Dowell, chief medical officer for the National Center for Injury Prevention and Control and co-author of the guideline, said, “Some policies and practices citing the guideline went beyond its recommendations. The guideline does not support abrupt tapering or sudden discontinuation of opioids, but has been inappropriately cited to justify hard limits or cutting off opioids. In addition, we’ve heard reports of misapplications beyond the guideline’s clearly stated scope. For example, applying the recommendations to patients in cancer treatment or experiencing surgical pain.”

The American Medical Association has criticized the “misapplication” and “inappropriate use” of the guideline, and the U.S. Food and Drug Administration (FDA) warned that forced tapering puts chronic pain patients at greater risk of withdrawal, uncontrolled pain and suicide.

As a result of these concerns and others, the CDC announced late last year it will be updating the guideline by late 2021. It’s anyone’s guess if the update will benefit chronic pain patients or dole out more of the same.

In a related matter, the U.S. Drug Enforcement Administration announced last month that illicit fentanyl, not prescription opioids, was the “primary driver” of the U.S. overdose crisis during 2019. Despite that, the DEA continues to cut the annual supply of prescription opioids, which is already at its lowest level since 2006.

Are Lyrica and Neurontin becoming the new enemies?

During 2017-18, a growing number of reports came out of the United Kingdom warning doctors and patients about the addictive qualities of gabapentin (name brand: Neurontin) and pregabalin (name brand: Lyrica), two drugs commonly prescribed for fibromyalgia-related nerve pain. During 2019, we saw the first stirrings in the U.S. of what might eventually be a crackdown on gabapentin/pregabalin similar to what we’ve seen with opioids.

In December, the FDA announced it would add new warnings to Lyrica, Neurontin and their generics, cautioning doctors against combining these drugs with others that can slow breathing, including opioids.

The FDA announcement went on to say, “We have also required the drug manufacturers to conduct clinical trials to further evaluate their abuse potential, particularly in combination with opioids, because misuse and abuse of these products together is increasing, and co-use may increase the risk of respiratory depression.”

Earlier in the year, University of Oxford researchers released the results of a new study which linked these drugs to an increase in suicidal behavior, unintentional overdoses, injuries and car accidents. A Clinical Toxicology journal article published in December further established a connection between gabapentin usage and an increased risk of suicide attempts. A 2018 Canadian study found that people who combined opioids and high-dose pregabalin (over 300mg) were twice as likely to die from accidental overdose than those who took opioids alone.

Speaking of Lyrica

Last July, the FDA approved the first generics of Lyrica, saving patients and insurance companies billions in annual costs.

Early cannabis research looks promising

An Israeli study found more than 80 percent of fibromyalgia patients experienced an improvement in their symptoms after using cannabis for six months. Researchers also reported 22 percent of patients in the study were able to stop or reduce their use of opioids.

Is the answer to fibromyalgia in the gut?

Last June, researchers from McGill University Health Centre in Canada found the gut microbiome of fibromyalgia patients is noticeably different from those of healthy controls.

“We found that fibromyalgia and the symptoms of fibromyalgia – pain, fatigue and cognitive difficulties – contribute more than any of the other factors to the variations we see in the microbiomes of those with the disease,” said lead researcher Dr. Amir Minerbi. “We also saw that the severity of a patient’s symptoms was directly correlated with an increased presence or a more pronounced absence of certain bacteria – something which has never been reported before.”

Researchers aren’t sure if the variations in bacteria are actually causing fibromyalgia or are simply a manifestation of the condition. More research is needed to answer these questions.


Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

Beware of Weight Loss Scams!

weight loss scams

As technology advances, so does the ability of scammers to fool us. They’re able to gather all sorts of information about us and our interests, enabling them to target us with specific scams that we’re more likely to fall for. The doctrine of caveat emptor – “let the buyer beware” – has never been more true.

Recently I received an email that appeared to be from a close friend. The email said she had found a wonderful thing, gave a link and was signed with her name. Since we often share information and links with each other, I didn’t think much about it.

When I clicked on the link, the page that opened had the logo of a popular entertainment website, making it appear to be legitimate.. There was a large photo from the Shark Tank TV show and the article headline was “Why Every Judge on Shark Tank Backed this Product.” The article went on to say that for the only time ever all of the judges on show came together and invested in this amazing new weight-loss product, which was flying off the shelves so fast they couldn’t keep it in stock.

Playing on the popularity of the keto diet, they claimed that this product, which was a form of keto salts, would not only put your body into ketosis so it would rapidly burn fat, but would keep it there so your body would continuously burn fat around the clock. They promised dramatic weight-loss results with little to no effort.

To back up their claim, they featured “before” and “after” photos of two celebrities – Mariah Carey and Melissa Joan Hart – who had supposedly lost large amounts of weigh using this product.

Oh, and to add one more little tidbit intended to draw me in and lend credibility to their claims, the pair who had developed this miracle product just “happened” to be from my state.

As I scrolled down the page, what started out looking like an article reporting on an interesting aspect of a TV show, soon became a high-pressure sales pitch. Since they only had a handful of products left, they said they were only offering them to people in my state – and only for a very short time. The clincher was a countdown clock with the seconds ticking off. Only eight minutes left before this unbelievable opportunity would be gone forever.

My scam radar, which began flashing about a quarter of the way into the article, was now on full alert. At this point, I went back and inspected the email that was supposed to be from my friend. Although it had her name on it, the return email address was not hers. Next I did a Google search for ‘ketosis shark tank scam.’ The results verified my suspicions.

The Better Business Bureau looked into this company and confirmed that the Shark Tank image on their website was taken from a different episode and had nothing to do with this product. In fact, their research was unable to locate any Shark Tank episode that featured the keto product in question. They also expressed multiple concerns about the company’s extreme claims.

How Scams Like This Work

Since I didn’t buy the product, I can’t say for sure exactly how this particular scam works. I just know that a company that uses stolen email addresses and falsifies identities in order to get you to their website, not to mention blatantly lying in their advertising, is not a company I would trust with my credit card number.

Typically scams like this operate in one of two ways:

  1. They take your money and never send you a product. Once they have your credit card number, they can use it fraudulently themselves or sell it to someone else who wants to steal your identity.
  2. If you read the small print, when you order the product you are actually agreeing to a subscription to purchase the product every month. Often those monthly fees are significantly higher than the initial “bargain” price of the product. Repeated attempts to cancel the subscription will likely fail and ultimately the only way to get it stopped will be to cancel your credit card.

Red Flags to Watch For

With thousands of weight-loss products on the market, how can you protect yourself against scams? Here are four red flags to watch for:

1. Unrealistic Claims

As much as we would all love to believe there is a magic pill that will cause all of our excess weight to melt away with little to no effort on our part, it’s just not possible. The old saying “If something seems too good to be true, it probably isn’t” is a good rule of thumb. There are legitimate supplements available that support healthy weight loss, but any product that promises dramatic weight loss quickly with little effort is lying to you.

2. Vague Scientific Evidence

Scammers often tout scientific research as evidence of their product’s effectiveness. They may use phrases like “research shows that people taking this product lost weight 50% faster.” Faster than what? If they’re comparing people who are taking the product as well as dieting and exercising to people who are not dieting and exercising, it would stand to reason they would lose more weight. But it’s most likely the dieting and exercise that caused the weight loss, not the product. Also, be sure to look for references to back up any scientific claims. If they don’t cite the studies and preferably give you a link to them, you should be skeptical.

3. An Exceptionally Long List of References

While it’s important to look for references to back up any scientific claims, sometimes scammers will offer long lists of 40 or 50 references to try to impress you. Unfortunately, most of those references may have little or nothing to do with the product they’re trying to sell you. They’re counting on the fact that most people are not going to spend hours checking out every reference.

4. Lots of Glowing Testimonials

Testimonials can be a powerful tool to sway us to try a product. We want to believe that if something worked for someone else, it will work for us. However, a testimonial on a product website or in an ad should be taken with a grain of salt. There’s no way to know whether they are even real. A lot of testimonials claiming to have had miraculous results should fall under the “too good to be true” rule.

A Favorite Target

The bottom line is that those of us who want to lose weight are popular targets for scammers. Most of us have tried to lose weight and failed or regained lost weight multiple times. We are are desperate to find something that will help make losing weight easier. If we’re not careful, that desperation can make us easy targets for scammers. Just remember, if you fall for one of these scams, the only thing that will weigh less is your wallet.


Karen Lee Richards is ProHealth’s Editor-in-Chief. A fibromyalgia patient herself, she co-founded the nonprofit organization now known as the National Fibromyalgia Association (NFA) in 1997 and served as its vice-president for eight years. She was also the executive editor of Fibromyalgia AWARE magazine. After leaving the NFA, Karen served as the Guide to Fibromyalgia and Chronic Fatigue Syndrome for the New York Times website About.com, then worked for eight years as the Chronic Pain Health Guide for The HealthCentral Network before coming to ProHealth. To learn more about Karen, see “Meet Karen Lee Richards.

Innovative New Fibromyalgia Medication Preparing for Next Phase of Testing

It’s been a long and winding journey, but what some would argue could be the most innovative pharmaceutical treatment for fibromyalgia ever is finally on track for a phase 2B clinical trial by this fall.

Dr. Skip Pridgen - developer of IMC-1 drug for fibromyalgia

Dr. William “Skip” Pridgen

Dr. William “Skip” Pridgen, the developer of the treatment called IMC-1, is scheduled to present several funding options to his board of directors this week. Afterwards, Innovative Med Concepts, the company founded by Pridgen, is expected to commit to a new partner to help fund the phase 2B trial.

A venture capital firm and at least two pharmaceutical companies are reportedly interested in backing IMC-1, but Pridgen is mum on which path forward the leadership of Innovative Med Concepts may ultimately take.

If IMC-1 makes it to market, the drug will be unlike any other pharmaceutical treatment for fibromyalgia currently available to patients because it combines famciclovir, a common antiviral medication, with celecoxib, an anti-inflammatory arthritis drug with antiviral properties.

IBS Connection Leads to Identification of Possible Cause for Fibromyalgia

Pridgen and his team believe fibromyalgia is triggered by herpes simplex virus 1 (HSV-1). The theory that the cause for fibromyalgia is some underlying infection makes sense given the condition’s cluster of vague and fluctuating symptoms, which include chronic pain, fatigue, sleep disturbance, digestive issues, headaches, neuropathy, depression, anxiety and more. To many, that combination sounds suspiciously like an immune system response.

“It turns out, if you go back to the 1960s and 70s, there were a group of scientists and physicians who recognized a condition like fibromyalgia, and in that condition, they theorized there was some low-level infection,” Pridgen explains. “They didn’t know what it was, but … because it was ongoing, the body was constantly reacting to it, [causing the body to have] an abnormal stress response.”

Pridgen began to suspect HSV-1 is a culprit in fibromyalgia while treating patients with irritable bowel syndrome (IBS) and fibro in his Tuscaloosa, Alabama, gastrointestinal practice. He noticed the symptoms of many of his IBS/fibromyalgia patients tended to increase in severity about every three months and began to suspect there could be an infectious component to their illnesses since some viruses cycle similarly.

On a hunch, he prescribed antivirals to some of his patients to test his theory. As the months passed, he noticed the IBS/fibromyalgia patients who improved the most were also taking some sort of nonsteroidal anti-inflammatory drug (NSAID) in addition to the antiviral he’d prescribed.

“A portion of my patients, about 30%, called me up or came to see me and said, ‘I don’t know what you’re doing but I love it! My IBS is getting better, but … my pain is getting better, too,'” Pridgen recalls. “It turned out, if you took away one of the medicines, their symptoms returned. It happened like that every time, so we knew this [antiviral/anti-inflammatory] combination was the key. Our medicine hits the virus at least three different ways. We believe it forces the virus back to sleep. Once the virus is asleep again, and there’s no ongoing abnormal stress response, the body’s immune system turns around and goes back to normal.”

(This article gives a more thorough explanation of the connection between HSV-1 and fibromyalgia.)

To bolster Pridgen’s theory, a yet unpublished University of Alabama study showed the presence of a protein specific to HSV-1 in the stomach biopsies of more than 80% of fibromyalgia patients. That protein was missing from the stomachs of healthy control subjects.

“We feel this is strong corroborating evidence,” Pridgen says.

The Progress of IMC-1 Studies

In 2017, Pridgen and his team published the results of a phase 2 “proof of concept” study in which 143 fibromyalgia patients were given IMC-1 over 16 weeks. The results were similar to Lyrica and Cymbalta, two fibromyalgia drugs currently on the market. Around 30% of patients taking IMC-1 during the trial experienced at least a 50% reduction in pain.

“A significant decrease in fibromyalgia-related pain was observed for patients on IMC-1 treatment versus placebo,” the study reads. “[Patient’s Global Impression of Change questionnaire] response rates were significantly improved with IMC-1 treatment. Overall, patient self-reported functioning … was significantly improved. Fatigue was also significantly improved as measured by the PROMIS fatigue inventory.”

Existing fibromyalgia medications are known for their troublesome side effects. However, IMC-1’s side effect profile is low, according to the study results. In fact, more people in the placebo group (16%) dropped out of the study due to side effects than those actually taking IMC-1 (5%). That rarely happens!

Although IMC-1 performed just as well as current fibromyalgia medications, Pridgen is hopeful it will do even better during the upcoming phase 2B trial. Due to U.S. Food & Drug Administration guidelines, the 2017 study used a dose that was much less than what Pridgen ordinarily uses with his patients in his practice.

During 2018-19, Innovative Med Concepts completed animal and human toxicity/safety studies for that higher dose. All of those studies came back without issue, so the new 2B trial this fall will use the exact dose of IMC-1 that Pridgen has successfully given his patients for years now.

“People come to our practice from all over the world now,” Pridgen says. “We’ve been able to get the vast majority of patients to about 85% better. That’s always our goal, and we don’t quit. We keep tweaking and tweaking until we figure out how to get them that last little bit, but it’s rare to have a patient in our practice who is put on this medicine who doesn’t at least get a 50% or 60% improvement in pain, and to date, [no other drug] is getting that kind of response.”

What’s next?

Based on the current schedule, the phase 2B trial should begin by early fall.

“We think there’ll be about 30 to 35 centers around the country,” Pridgen says. “I haven’t decided yet if we’re going to go into Canada, but that might happen.”

At this point, European and Asian countries will not be included in the study but that could change if Innovative Med Concepts’ new partner wants to go global.

For now, Innovative Med Concepts is focused on developing IMC-1 for fibromyalgia, but Pridgen believes the drug may benefit ME/CFS, irritable bowel syndrome and other conditions.

“I would not be surprised if we also started doing some phase 2 studies for some of these other indications because [IMC-1] works so well,” Pridgen says.

As more and more doctors refuse to prescribe opioids for chronic pain conditions, fibromyalgia patients desperately need more treatment options, and Pridgen hopes IMC-1 can fill that void.

“Our medicine has incredible pain-relieving qualities for those affected by fibromyalgia, and yet, it’s not a narcotic, [so] it doesn’t put patients at risk of having an overdose,” Pridgen says. “In this day and age, when every pharmaceutical company that sells narcotics is being sued by different states, and everybody’s looking for a way to properly treat these unfortunate patients who suffer from chronic pain, having a non-narcotic medicine that works and helps with this chronic pain sounds like awfully good news.”


Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

Epic Attempt: Will EpicGenetics Transform Fibromyalgia Diagnostics and Treatment?

Reprinted with the kind permission of Cort Johnson and HealthRising.

EpicGenetics – a biotech firm in Los Angeles – is attempting an FM trifecta: produce a blood and genomic test and provide a treatment.

EpicGenetics is trying to make a big splash in fibromyalgia. A Los Angeles biotech firm, they focused on producing diagnostic tests for complex conditions and produced what they believe is a highly unusual trifecta for any disease: 1) development of the first blood test for FM; 2) development of a genomic diagnostic test and; 3) launch of a treatment trial.

They seem to be doing well. Buoyed by demand for their FM/a blood test, the Los Angeles firm recently quadrupled their footprint, moving their labs and offices into a 50,000 sq. ft, facility. It’s all coming to a head, though. Their blood test, genomic test and treatment effort are all of a piece and will likely all rise or fall together. With their treatment trial underway, we should know over the next year if EpicGenetics is the next big thing – more accurately, the first big thing in FM – or not.

2012

When I learned they’d developed what they believe is an immune blood test for fibromyalgia (FM) (?),  I felt like rubbing my ears. Researchers had been focusing on the immune system in chronic fatigue syndrome (ME/CFS) for decades but have given it little attention in FM. I wasn’t dreaming, though. An immune test was being touted for FM – not ME/CFS. How had that happened?

The FM/a story starts back in 2012 with a University of Illinois study, “Unique immunologic patterns in fibromyalgia“. Immune cells from a huge set of FM patients and healthy controls (n=201) were cultured overnight and then stimulated the next morning with profoundly irritating plant lectins (PHA (phytohaemagglutinin) or PMA (pokeweed mitogen)).

(PHA is found in red and white kidney beans, green beans and fava beans. It takes just 5 raw red kidney beans to induce poisoning. Wikimedia reports that cooking reduces the very high levels of lectins in red kidney beans to safe levels. Some ME/CFS/FM practitioners do tout a lectin-free diet, however.)

These kinds of mitogenic tests are commonly used to assess white blood cell activity. The levels of 8 cytokines (IL-5, IL-6, IL-8, IFN-γ, IL-10, MIP-1α, MIP-1β, MCP-1) were measured before and after the stimulation.

No differences were found in the cytokine levels of FM patients or healthy controls before stimulation but, as in ME/CFS, adding a stressor got things moving – or rather, in the case of FM – failed to get things moving.

After the mitogenic stimulation, no less than seven of the 8 cytokines measured were quite significantly lower (1.4-8x’s lower) in the FM patients.  For some reason, the FM patients’ immune cells had reacted in a lackadaisical manner to the powerful stimulant given them. (Later analyses revealed that the test worked fine using just 4 cytokines.)

The authors noted that a similar pattern of reduced immune response to stimulation occurs in Sjogren’s Syndrome and depression.

2015

The 2015 study by noted UCLA immunologist Daniel Wallace, “Cytokine and chemokine profiles in fibromyalgia, rheumatoid arthritis and systemic lupus erythematosus: a potentially useful tool in differential diagnosis“, was bigger (n=358) and, with its inclusion of rheumatoid arthritis (RA) and lupus patients, better.  EpicGenetics was clearly hot on the trail of a diagnostic test.

The big question was whether people with autoimmune diseases like RA and lupus would have the same or a different cytokine profile as people with FM. By all rights, they should have been similar. FM, after all, got shoved in the rheumatology silo early on – which is packed with autoimmune diseases characterized by overactive immune responses.

Yet the results suggested FM was nothing like the other two autoimmune diseases. It demonstrated both high sensitivity (it picked out people with FM) and specificity (it rarely picked out people with RA, lupus or healthy controls). If you have FM, the test should show that. If you have RA, lupus or are healthy and don’t have FM, it’s unlikely you will test positive.

The increased cytokine production seen in RA and lupus suggested they’re not closely related to FM. (A subset of people with RA and lupus, and indeed, it seems all chronic pain diseases, do also have FM).

The authors noted that a similar pattern of reduced immune response occurs in Sjogren’s Syndrome and depression.  The authors were careful to say that the findings do not necessarily mean that FM is caused by an immune dysfunction, but Gillis has stated that he believes the immune systems of FM patients are not producing enough protective cytokines.

Strange Findings

Some of the findings, though, seemed strange. IL-6 – an important cytokine known to induce pain and sympathetic nervous system activation – was reduced in FM instead of increased. So was IL-8 – another major pain player – which also plays a role in pathogen defense. Low levels of MIP alpha and beta seemed to make more sense – both play a role in natural killer (NK) cell defenses.

FM researcher Daniel Clauw stated that the results flew in the face of past FM results – and he’s right: while mitogen-activated IL-6 tests have not been done in FM, both IL-6 and IL-8 have been found elevated in FM.

A 2016 study reported that “IL-6 and IL-8 are two of the most constant inflammatory mediators in FM” and that their levels correlated with symptom severity. A 2013 study found that a marker of inflammation (c-reactive protein) was correlated with IL-6 and IL-8 levels in FM and a 2014 review specifically pegged increased IL-6 and IL-8 levels as significant factors in FM.

In 2013, Clauw wanted the study to be replicated and in 2015, he got a replication in a very large study. Now – perhaps the best thing to do is to try to make sense of these seemingly paradoxical findings.

EpicGenetics has asserted (as did VanElzakker for ME/CFS) that the short life of cytokines, the effects of circadian rhythms on them, and other issues made assessing cytokine levels in the blood “unreliable”. Far better, they said, to isolate immune cells, smack them with an immune trigger, and see how they respond. They could be right.

Plus, who knows – maybe the weird pattern in ME/CFS where the system seems to be on alert – but folds when presented with a stressor – is showing up in FM as well.

What is Fibromyalgia Anyway?

IF FM isn’t a “normal” rheumatological disease, what is it? The authors proposed FM is a central sensitization disorder characterized by reduced responses to all sorts of different kinds of stimulation (sympathetic, hormonal, cytokine and chemokine).

All one may need, they suggested, to differentiate central sensitization from autoimmune disorders is to whack their immune cells with a trigger and see how they respond: the immune cells from people with central sensitization disorders will respond poorly, while the immune cells from people with autoimmune disorders will leap into action.

(Two years ago, Wallace found that another immune test – “cell-bound complement activation products (CB-CAPs)” – differentiated FM from lupus as well. Calling lupus the “prototypical autoimmune systemic disease in which hyperactivity of the immune system and production of autoantibodies lead to a variety of symptoms including chronic pain, arthralgia, fatigue, morning stiffness” and organ damage, Wallace demonstrated that these complement activation products were plentiful in lupus but were completely missing in FM.)

Few have linked – or have attempted to link – central sensitization with immune dysfunction as this group has. Gillis stated that his inquiry into FM began when he asked himself what could cause the many different symptoms in FM?  The only system he could come up with was the immune system.

Sensitive AND Specific Test

Gillis said the sensitivity of the test is now up to around 99% and the specificity of the test is now around 95%.

EpicGenetics reports that the test requires about an ounce of blood and is available in most states, Canada, Europe, Turkey, Mexico, Central and South America, the Caribbean, Hong Kong, Australia and New Zealand. It states that the test is “FDA-compliant” and is covered by Medicare and most insurance plans. The company can also help FM/a® Test applicants arrange for their blood draws at a local facility at no cost.

If not covered by insurance, the test is expensive (>$1,000). Your doctor must provide authorization but EpicGenetics will even help you find a more amenable healthcare professional. (Complete the FM/a® Test Application Form.)

Why get the test?

  • To rebut the doubters – whether they’re your doctor or your family or friends, that you have a real biological illness.
  • To save time and money. Dr. Gillis, the CEO of EpicGenetics, stated that literature indicates the average patient will spend $4,800 – $9,300 a year for 3-5 years before all the tests prove negative and the doctor decides you have FM.
  • To get the vaccine (see below).

The Genomic Test

EpicGenetics is all in with FM. They did not stop with the blood test. Their next steps were a genomic test and a treatment trial.

In 2017, the company announced it was embarking on “Campaign 250” an ambitious effort to conduct whole exome genetic testing on up to 250,000 FM patients who have tested positive on their FM/a test. Since, at $2,500 a pop, that campaign would cost $625 million, it hardly seems feasible (or worthwhile) to test that many people.  (EpicGenetics is apparently asking people who test positive for FM on their test to participate in the study.)

The company reported it had received FDA approval for a treatment trial but put it on hold pending further work on FM genomics. Not only did the company feel they were on the cusp of uncovering a genomic biomarker but they reported that biomarker validated their hypothesis that FM was an immune disease.

“We are cautiously optimistic that we are on the throes of a breakthrough in better understanding fibromyalgia. If we find these [genetic] patterns are unique for fibromyalgia, it further and hopefully will forever legitimize in the minds of everyone that fibromyalgia is a real disease, that it’s a disease of the body’s immune system, and that consequently it’ll change how patients are diagnosed and treated, and hopefully how we may be able to cure or reverse the disease.” Gillis

A second slate of studies were underway. Hoping that they could use the genomic signature to assess the effects of their treatment trial, they held it off for a year or two, and then earlier this year began the treatment trial.

The Vaccine Trial

“Given what’s been published in the medical literature, we believe this vaccine will reverse the immune system abnormalities [of fibromyalgia].” Dr. Bruce Gillis, Epigenetics CEO

Some people with ME/CFS run with horror from vaccines but EpicGenetics seems pretty confident that its vaccine will be helpful. Still the only vaccine used to fight tuberculosis, the BCG vaccine has been in use for over 100 years,

While vaccines are mostly used to fight off pathogens, they also stimulate the immune system. Carl Gottfries used another vaccine to treat himself and others with ME/CFS until the vaccine’s producer stopped production.

It just so happens that the BCG vaccine stimulates the same parts of the immune system EpicGenetics believes have taken a hit in FM.

The 300-person, randomized, triple-blinded, Phase II, Mass. General Hospital BCG vaccine trial started in January of this year and is expected to end in January 2022. A call went out earlier this year for more men and younger female patients.

Gillis was clearly excited by the vaccine:

“The expectation is that if the results are as good as we hope, potentially in as little as six months, we will have further opportunity to expand the treatment to many, many more people as we collect the data. We don’t expect significant side effects and we expect fairly rapid responses to the BCG by the people who participate in the trial who receive it.”

Contact Denise L Faustman, MD, PhD617-726-4084fibromyalgiastudy@partners.org if you’re interested

An ME/CFS Connection?

Gillis has pointed out how similar the symptoms of ME/CFS and FM are. If the vaccine works out in FM, ME/CFS is probably next. In fact, the two have more in common than symptoms. Every mitogenic test done in ME/CFS has produced the same general result as the two EpicGenetics FM studies: a markedly reduced immune response.

Given that, it might be a good idea to keep an eye on EpicGenetics.

Conclusion

Is FM an immune disease? Will EpicGenetics turn the world of fibromyalgia on its head with its trifecta – a blood test, a genomic test and a cheap treatment? If it does, will it apply to ME/CFS?

EpicGenetics hasn’t reported on the results of its genomic testing. Unless they hit it out of the park with the vaccine and stop the trial early, we probably won’t know about the results of the vaccine trial until 2022.

Will EpicGenetics epic plans come to fruition? Breakthroughs, as we know from experience, don’t come easy in medicine but sometimes they do come.  A cheap way to treat FM (and maybe ME/CFS) – even if it was a partial treatment –  would be a godsend. Time will tell.


About the Author: ProHealth is pleased to share information from Cort Johnson.  Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.

Has the “Reptilian Brain” Gone Haywire in ME/CFS? Back to the Brainstem We Go

Reprinted with the kind permission of Cort Johnson and HealthRising.

The most primitive part of the brain, the brainstem – a part of “the reptilian brain” – doesn’t get much respect in medical research. VanElzakker pointed out that most brain scan studies focus on the upper, more highly developed parts of the brain. Because brain imaging techniques can’t effectively capture the upper and lower parts of the brain, these studies often miss the brainstem.

The brainstem may be “primitive” in the sense that it was one of the earliest parts of the brain to develop, but that doesn’t mean simple, and it certainly doesn’t mean unimportant. Just the opposite, in fact. In this case, primitive means fundamentally important.

Located at the bottom of the brain where it meets the spinal cord, the brainstem is the first recipient of all the sensory and “motor” signals from the spinal cord. It regulates very basic functions – like breathing, heart rate, blood pressure, digestion, alertness, sleep – the fundamental stuff you really don’t want to go wrong.

If you want to walk or move your arm, or type on a keyboard, you need your brainstem to do that. Coordination, balance, equilibrium and muscle tone – these fine-tuned processes essential to movement – are all regulated by the brainstem. Severely damage your brainstem and you’re pretty much toast – destined to live out what’s left of your life in a care facility.

Lastly, the brainstem is densely packed with mast cells – an emerging problem in ME/CFS.

Most ME/CFS brain imaging studies have focused on the upper part of the brain, but one Australian researcher, Leigh Barnden, has been bucking the trend.

One study found neuronal damage in the brainstem which could be causing autonomic nervous system problems.

Another study which found impaired communication from ME/CFS patients’ brainstems to other parts of their brain suggested the same. Interestingly, the study also found what appeared to be a compensatory response – increased signs of myelination in the sensorimotor cortex of the brain. Barnden believed the sensorimotor region was bulking up in an attempt to understand what the wonky brainstem was telling it. Barnden suggested those hard-to-understand signals from the brainstem could explain some of the problems with movement in ME/CFS.

Barnden’s next study found inadequate communication between the brainstem and other parts of the brain (vasomotor region, hypothalamus and prefrontal cortex) that regulated autonomic nervous system functioning in ME/CFS.

The Study

Neuroimage Clin. 2019; Intra brainstem connectivity is impaired in chronic fatigue syndrome. ,a,⁎ Zack Y Shan,a,b Donald R Staines,a Leighton R Barnden,a Kevin Finegan,c Timothy Ireland,c and Sandeep BhutaC. 10.1016/j.nicl.2019.102045

This year, Barnden, our brainstem pioneer, is at it again. His Oct. 2019 study, “Intra brainstem connectivity is impaired in chronic fatigue syndrome“, used a functional MRI to see how areas within the brainstem and some areas outside the brainstem were communicating with each other – at rest, and during a cognitive task.

Barnden mostly examined the reticular activation system (RAS), a network of neurons that regulate wakefulness and sleep, the fight and flight response, posture, and the ability of the brain to stop paying attention to innocuous stimuli, etc. (Your brain is powerful but it can only process so much stimuli at one time and if your RAS is not doing its job you may have trouble focusing, etc.)

The bilateral medulla and cuneiform nucleus regions in the medulla and midbrain, the thalamus, the midbrain dorsal Raphe, hippocampus and left culmen, as well as the connections within the brainstem, were all tested.

The fMRI assessed brain activity levels using blood oxygen levels. The higher the blood oxygen level in a part of the brain, the better connection between parts of the brain.

Results

Very quickly, a key theme in ME/CFS research reared its head once again. At rest, everything was normal but when put under a cognitive stressor, the ME/CFS patients’ brains appeared Abby-normal indeed. Some studies which use patients at rest do show abnormalities but apparently there’s nothing like putting people ME/CFS under some sort of mental or physical stressor to produce results. This is, after all, the exertion disease.

It turned out that the people with ME/CFS demonstrated something of a “communication breakdown”.  Different parts of their brainstem weren’t talking well with each other. Nor was their brainstem communicating well with other parts of the brain.

The most problematic connection for people with ME/CFS was between both parts of the medulla oblongata and the left cuneiform nucleus. While it was difficult to pin down the exact impact, Barnden reported that weakened connections between these two areas of the brain could produce such issues as maintaining movement, sleep quality, autonomic function and cortical arousal levels, which affect memory, learning and problem solving,

ME/CFS patients’ brainstems’ connection with two nuclei in the thalamus, and between the rostral medulla and hippocampus, were also impaired – suggesting that whatever damage has occurred in the brainstem is also affecting connectivity or traffic to the midbrain as well. Because the thalamus relays motor signals to the motor cortex and regulates sleep, alertness and wakefulness, a bad connection could impact all of those.

Check out the reduced connections in the ME/CFS brain on the right vs the healthy controls on the left. (from Connectogram image – study)

Barnden’s results were given an extra boost when he found that weaker connections within the brainstem and outside of it were associated with more severe symptoms.

Barnden, and Jeff’s and Jen Brea’s experiences with craniocervical instability gave us a vivid display of what a tweaked brainstem can produce. In their case – and in the cases of a surprising number of other patients – lax ligaments were allowing their skull to settle onto their brainstems. The results were severe ME/CFS-like symptoms – symptom which disappeared when surgery corrected that issue. Problems with the brainstem could conceivably, then, produce many of the symptoms – if not all the symptoms – associated with ME/CFS.

Barnden has not, to my knowledge, mentioned craniocervical instability in any of his studies. It’s not clear if it would show up in them but it seems inconceivable, on the other hand, that CCI/AAI could be responsible for all the brainstem issues he’s found in ME/CFS. If that’s true, then the brainstem in some patients is being impacted another way – perhaps by a hit-and-run virus or an inflammatory or autoimmune response.

We clearly need studies that will tease out different factors that could be impacting the brainstem. The first ME/CFS CCI/AAI paper is about to be published – and will helpfully alert more researchers and physicians to this problem. Avindra Nath’s assessment of CCI/AAI in its ME/CFS intramural study will help bring some clarity as well.

We should be hearing more about the role the brainstem – or the “reptilian brain” – and its control of basic processes plays in ME/CFS. VanElzakker is pursuing his own brainstem studies and the NIH is incorporating brain imaging into their intramural study as well.

Conclusion

With four studies under his belt, Barnden’s brainstem studies have become a model of consistency. Barnden has found evidence of damage to the brainstem (demyelination) which may have sparked a compensatory response outside the brainstem (remyelination), reduced functioning within and outside of the brainstem, and evidence that brainstem issues are associated with more symptoms.

All this suggests that this so-called primitive, but oh-so-fundamental part of the brain is not working well in ME/CFS.

Jeff and Jen Brea have shown just how devastating brainstem issues can be. Problems with the brainstem could help explain the problems with alertness, sleep, the autonomic nervous system, difficulties with focus and attention, mental fatigue and even coordination and movement. In fact, if you’re looking for one issue that could explain some of the really fundamental problems in ME/CFS, the brainstem could very well be it.

Just why brainstem problems appear to be occurring in ME/CFS is unclear but several studies underway should help to clarify the role it plays.


About the Author: ProHealth is pleased to share information from Cort Johnson.  Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.

Bodybuilder Faces the Toughest Battle of His Life – ME/CFS

In 2010, Jamison Hill suddenly found himself horribly sick during a routine workout at the gym. This was a strange occurrence: like many who fall prey to a cruel disease like ME/CFS or Lyme Disease, Jamison was an overachiever. As an aspiring bodybuilder, Jamison spent his days flipping tires, lifting heavy weights, and regularly engaging in physically punishing workouts mere mortals would never attempt. This was in addition to being a college student, posing for fitness publications, and working two jobs.

By 2015, Jamison found himself severely sick. “I lost my ability to speak, eat, walk, and I had to rely on other people to keep me alive,” he notes. By this point, he had already started writing, documenting his experiences of dealing with more moderate health problems following a tragic car crash. The escalation of his health issues came as a shock, and shifted his goals dramatically.

“I wanted to be a professional bodybuilder; I wanted to write for magazines and start my own fitness company. When I got severely sick there was only one goal I could still aim for: writing for magazines. So that’s what I went with.”

After years of publishing his work on chronic illness in outlets like The New York Times, The Washington Post, The Los Angeles Times, and his personal blog, Jamison Writes, Jamison has compiled a memoir, When Force Meets Fate.

“It is a transcendent story of my transformation from a bodybuilder to a bedbound patient with ME/CFS,” Jamison writes. “I take the reader on a decade-long journey that starts with me as a healthy person and ultimately ends with me trying to recover from the illness that has taken my ability to walk, talk, and eat solid food. It is, foremost, a story about the strength it takes to survive life’s toughest obstacles. It focuses on the human condition, and the amount of punishment a person can withstand without giving up.”

He chose the title, When Force Meets Fate, to reflect “how unexpected fate can be, how fragile and easily altered it is, but also how surprisingly rigid it is when met with the full force of someone wishing to control it.” Life with chronic illness is a daily struggle of trying to manage something totally unpredictable: “As much [as] I want to believe that I control my fate, no matter how much force I use to try to control it, at a certain point I have to surrender to it being out of my hands.”

His book reflects this shift, of realizing his fate was beyond his control, as he comes to terms with all these unexpected changes. “The memoir is about holding on to my identity, and discovering new parts of myself, amidst circumstances that would be the demise of many people,” Jamison writes. “In doing so, I learned how to define myself in entirely new terms. But most of all, I learned how to keep going and how to carry on against all odds.”

Jamison has managed to write this, despite fatigue, brain fog, and orthostatic intolerance, some of the hallmark symptoms of ME/CFS. His writing process involves keeping a journal, and also building on audio recordings of interactions with doctors. He was able to write much of the book before the onset of his most severe symptoms. Still, he experiences these cognitive challenges; “When I do write with brain fog, it’s definitely a struggle. Often I look back and wonder how I wrote at all.”

When Force Meets Fate presents such a unique opportunity for those inside as well as outside the ME/CFS world to understand from a first-person perspective the toll this illness takes, both mentally and physically. Jamison details the struggle to find ME/CFS treatments and eventually regain some of the basic, daily activities stripped away by severe ME/CFS and Lyme Disease.

When Force Meets Fate’s publishing is contingent on pre-orders, either for e-books or print copies. By placing a pre-order, you can ensure the publication of this incredible memoir. You can place your pre-order here: When Force Meets Fate.


Rachel Horton is a freelance writer and researcher based in Milwaukee, Wisconsin. She was diagnosed in 2008 with Chronic Fatigue Syndrome and Fibromyalgia, and now saves her energy for sailing and dinner parties. She graduated with a degree in Economics from Indiana University, and now applies her analytical skills to finding new treatments and experiments, which she chronicles at https://chronicfatiguesanity.wordpress.com/. Follow her on Twitter @cfsanity.

Self-Help Goals in the New Year: Here’s the Biggest Mistake We All Make

With an illness like chronic Lyme disease, self-help can play a big part in our well-being. When little help is available from the medical profession, we can be very motivated to do what we can to minimize our Lyme disease symptoms and to be as happy and as healthy as possible. However, there is one thing that is guaranteed to get in the way of our progress despite all our good work. And yet it’s the most natural thing in the world: wanting to see results!

We do things because we want to see a change; we take extra rests during a crash or flare because we want to get back to where we were; we change our diet hoping our gut health symptoms improve; we take supplements wanting to have more energy and vitality; we meditate and learn relaxation skills wanting to be able to sleep better; we implement self-care strategies like detox. Self-help is hard when you have little energy and chronic pain, and in order to find the motivation to keep at it, we fixate on where we want to be as a result of it. But that attachment to outcome brings a whole host of problems that ultimately spoil our efforts and impede our progress.

As a coach, I understand how belief in the results is essential for motivation and often encourages people to keep their eye on the prize. However, over the years of working with people with chronic illnesses, I’ve noticed how this can so easily turn into the kind of attachment that just gets in the way.

Self-Help and Recovery from Lyme Disease

How do attachments gets in the way?

Quite simply, when we are desperate to see a result, we feel frustrated and disappointed when we don’t see it, or at least when we don’t see it fast enough. These feelings bring tension into our body, which gets in the way of our progress. This tension may even increase Lyme disease symptoms. If your body is already perceiving itself as being under threat (by not having enough energy for functioning or because of the pain signals it’s receiving), that tension will just add to the strength of the threat perceived. It will also be using energy that could otherwise be used more effectively and could be feeding into and amplifying secondary pain signals.

In order to give all our self-help the best chance of getting results, we need to approach it from a place of being at peace, which basically means being accepting of what is in this moment, which means not being attached to the results you want to see.

How do you let go of attachments?

The first step to any change is always awareness. When you notice a sense of striving or desperation around what you’re doing, then it’s likely that you’re feeling attached to a particular result. Frustration and disappointment are other indicators of that attachment. Once you have the awareness that attachment is present, the next part of dealing with it is absolutely crucial: acceptance, understanding and compassion. It’s totally understandable that you feel this way in this situation. It’s OK that you’re feeling this sense of desperation or frustration. They are totally normal and natural responses. It’s totally understandable to want things to be different when you’re suffering. Then (and only once you’ve offered yourself this compassion) you can gently remind yourself that attachment isn’t serving you. Remind yourself that accepting the way things are and being at peace with it is going to give your body a better chance of recovery from Lyme disease – that your self-help will be more effective without that tension.

Can you get motivated without attachments?

I’m very careful not to get into wanting to see a specific outcome in a specific time frame. Instead, I do my self-help with the intention of being as happy and healthy as I can be today. I trust that whatever I do for my health in regards to Lyme disease treatment will have a positive impact on my future too, without fixating on wanting to get there. I still have an intention for where I’d like to move towards, but instead of focusing on getting to the destination, I pay attention to the fact that in this moment I am moving in the right direction, which is a healing mindset for me.

For example, when I’m in an extended crash, I let go of wanting to feel better each day, and instead focus on accepting where I am, and I peacefully distracting myself while I wait for the worst to pass. I trust that it will. I trust that I am moving forward (however imperceptibly), and I keep my focus in the present moment, knowing that this is the best thing I can do for myself right now.

When I am able to let go of wanting to see the results, life is so much more relaxing. I know that this relaxation is creating the best conditions possible for my healing. I know that I am doing the best I can do for myself to continue to move forward.

This article was first published on ProHealth.com on November 19, 2018 and was updated on December 30, 2019.


Julie Holliday, ProHealth’s Inspirational Editor, is a holistic life coach and writer committed to helping people take back control from energy-limiting chronic illness to live a more relaxed, balanced and fulfilling life. Julie loves spending time in nature, growing her own vegetables and spends as much of her day as possible in a comfortable pair of yoga pants. Writing as the ME/CFS Self-Help Guru, Julie shares tips on her weekly blog. You can also follow her on Twitter, Facebook and Google+.