How Do You Know If Myaglic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia or Environmental Sensitivities Information Is Legitimate?

Oct 16, 2021

When False Ideas Cost Lives - Scurvy and ME/CFS

In any young field and in the absence of gold standard tests and treatments theories about what causes and what cures diseases abound. This has been the case with famous historical diseases like scurvy. Even after James Lind did a trial showing that citrus fruits prevented scurvy, the owners of breweries in England put forth the alternative theory that malt (which contains no vitamin C) was a cure for scurvy. The famous Captain James Cook ensured his crews had a supply of citrus fruits and he sailed to every corner of the earth without losing a single sailor to scurvy. Nevertheless, it took over 40 years for the English admiralty to accept and support Lind's and Cook's findings. In the mean time, thousands of sailors died needlessly of scurvy. The tale is told in a riveting book by Kenneth J. Carpenter and is summarized in a paper commemorating Carpenter's contribution to nutrition science.

Examples abound of the medical establishment, sometimes influenced by socialization (unconscious assumptions) and sometimes blinded by commercial interests, believing and promoting false, even harmful ideas. Thankfully, in most cases, science catches up and the errors are corrected. But as in the case of scurvy it often takes 40 years.

What about ME/CFS? It is approaching 40 years since the outbreak in Incline Village, Nevada which brought ME/CFS to awareness in North America. For most of that time, the field has been influenced by the faulty belief that ME/CFS was due to inaccurate beliefs, fear of activity and deconditioning. Patient advocates have pointed out from the beginning that this hypothesis has no construct validity - it doesn't match the lived experience of patients. Yet this theory, so manifestly false, is still influencing medical care.

As an example, the draft NICE guidelines for ME/CFS (National Institute for Health and Care Excellence in the UK) were vastly improved from their predecessor in their acknowledgement of ME/CFS as a biomedical disease and the potential harms of exercise. And yet, buckling under pressure from powerful medical lobbies, publication has been paused. This shows that just because influential, powerful "experts" espouse an idea doesn't mean it is true.

Objective Tests Are Available for ME/CFS. Why Aren't We Using Them?

Seeking to help patients with objective tests that can validate their experiences, I have run a multidisciplinary assessment team (the ETeam) in Calgary, Canada for over 20 years. For the past 10 years, the ETeam (through TCR Sport Lab in Calgary) has offered the 2 day CPET test developed by the Workwell Foundation. The test results consistently provide objective evidence for the existence of PEM.  

I can count in the hundreds, the letters I have written over the past 20 years explaining to colleagues, private insurance companies and government disability insurers, that exercise makes post exertional malaise (PEM), the core symptom of ME/CFS worse. And that with repeated PEM crashes people with ME/CFS can become severely ill. People with a vested interest in not offering disability support can be deaf to the evidence.

ME/CFS 40 Years on - Are We Approaching a Tipping Point?

We are approaching the 40 year mark and the volume of good research on the biomedical foundations of ME/CFS is increasing. I can no longer keep up with all the publications I want to read. This is a great problem to have. I sense that we are near the tipping point. The Centers for Disease Control and the National Institutes of health in the US are taking ME/CFS seriously and are funding important research.

In Canada, the Canadian Institutes of Health Research  (CIHR) has funded the first team grant for ME. Our team is the Interdisciplinary Canadian Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis – ICanCME – Research Network.

We have big goals. Here are a few of them:

  • Develop a diagnostic test for ME/CFS.
  • Provide medical education to all health care professionals and trainees in Canada.
  • Identify and remedy gaps in the provision of clinical care.
  • Develop a research infrastructure including a Canadian biobank.

So how do you know that we are on the right track?

What Can Patient Power Achieve?

In my opinion the answer lies with patients. Patients develop strong spidey senses. They know what they know from lived experience and are not easily swayed by fancy hypotheses which don’t match their knowledge. In the field of ME/CFS, patients have been key to most of the major advances in public awareness and policy world wide. In Canada, patient advocates were the force behind the Canadian and International Consensus Guidelines, the inclusion of CFS, FM and MCS in the Canadian Community Health Survey conducted by Statistics Canada and the formation of the ICanCME research network.

Organizations such as

How Can You Tell if Information is Legitimate?

In a climate of controversy, how do you judge whether education on ME/CFS, FM and ES is legitimate? A course such as my Pathways to Improvement for example. You may ask yourself some questions.

Is the Focus on the Mind or the Body? (in other words is the course in keeping with current science?)

I am a psychiatrist and my expertise in this area has shown me that ME/CFS, FM and ES are NOT psychiatric or psychological conditions. Pathways to Improvement is based on the scientific bedrock that ME/CFS, FM and ES are serious biomedical conditions requiring biological interventions. The self-management strategies you will be introduced to in the pathways course are recommended by leading clinicians worldwide and are in keeping with the IACFS/ME Primer, the US ME/CFS Clinicians Coalition and the Canadian and International Consensus documents. They include sleep management, pacing, diet information and transforming pain through neuroplasticity.

These practices are powerful and act on your biology. While they do not cure these diseases, when skillfully applied, self-management strategies can make a big difference to your ability to participate in the activities you enjoy. Pathways to Improvement is very much focused on biology, the biology of the mind and the body and the constant interaction between the two.

Pathway to Improvement Topics

Pathway 1: Biology of Change
Pathway 2: Diagnosis
Pathway 3: Sleep
Pathway 4: Energy and Activity
Pathway 5: Diet
Pathway 6: Persistent Pain
Pathway 7: Environmental Exposures
Pathway 8: Emotions and Stress

Is the Course Good Value for Money?

There is a lot of free information online. So many may wonder why you would pay for a curated course when a DIY approach is so accessible. Those of you who have tried will know that it takes a lot of time to sort through the internet and social media to figure out what is accurate and what might apply to you. I have done that footwork for you in over 30 years of personal experience, clinical practice and study. I have attended hundreds of conferences, read thousands of papers and written a few myself. The Pathways course is a one-stop to get consensus-based, up-to-date information about practices you can implement to improve your quality of life. 

Does the Course Developer Have Any Conflict of Interest?

I have priced the Pathways course keeping in mind that most people with ME/CFS, FM and ES are living on a limited income, often below the poverty line. There are no hard sells. There is a full – no questions asked - refund up to 30 days after the course starts if you decide it is not for you. The focus of the Pathways course is self-management you can do on your own for little or no cost. I do not sell or promote any product or service. My goal is to provide a roadmap to patients worldwide living with ME/CFS, FM and ES who lack access to knowledgeable clinicians.

What Do Patients Say?

So, all that being said what do patients say about the Pathways course? Recently a member of the Associated New Zealand ME Society participated in the Pathways course. Here is part of her report. Click here to read more.

An ANZMES executive committee member attended the May 2021 online course so that ANZMES has a first-hand experience with it. We do not recommend treatments however we believe Dr. Stein to be a reputable health professional. We believe this program may be ideal for the newly diagnosed, for those who have not previously come across symptom management techniques, or for those that have tried a few things and feel stuck and are seeking a fresh take. Dr. Stein has a wealth of knowledge and experience, having worked closely in group and 1-on-1 sessions with people with ME/CFS for over two decades, and teaching self-management strategies that worked for her. Dr. Stein’s empathy, insights, and expertise are invaluable.

Thank you so much for the opportunity to be a part of this program.

Kind Regards

Fiona Charlton

on behalf of ANZMES

For more on the Pathways course you can check out Cort Johnson's blog post reviewing the course.

Can Self-Management Really Improve My Health?

Patients with ME/CFS, myself among them, have been invalidated, dismissed, misdiagnosed and left to fend for ourselves. There is justifiable anger at the scientific community for woefully inadequate research funding. There is anger at the medical profession for lack of interest, lack of education and lack of effective clinical care. Patients want and deserve legitimate biomedical treatments for their biomedical diseases.

As I describe in my interview with Cort Johnson of Health Rising, I have traveled the world and spent more money than I care to admit on tests and treatments not covered by Canadian health care. I share the view that we deserve ME/CFS to be taken as seriously as other disabling diseases.

As I pass the 30 years mark in my own journey with ME/CFS and associated conditions I have learned a lot. I have learned that in the absence of a transformative treatment or cure I am not without resources:

  • Self-management is what keeps me functional day to day.
  • Self-management is under my control.
  • Self-management has very few side effects compared to supplements, medications and medical interventions I have tried.
  • Self-management strategies are among the most powerful modulators of neuroplasticity, epigenetics and the microbiome and other mediators of biological change.
  • Self-management and biomedical interventions are not an either-or. We need both.
  • Self-management makes a difference.

To learn more about the pathways course See details and registration for Pathways to Improvement

 

Author: Eleanor (Ellie) Stein MD FRCP(C)

I am a psychiatrist with a small private practice in Calgary and am an assistant clinical professor in the faculty of medicine at the University of Calgary. Since 2000, I have worked with over 1000 patients, all with ME/CFS, FM and ES. My passion for this field comes from my own struggle with these diseases, my desire to improve my health and then pass on what I learn. My goal is for every patient in Canada to have access to respectful, effective health care within the publicly funded system. If you are looking for help and resources to help combat ME/CFS, FM and ES, see my guides and webinar.