Debunking 6 (ME/CFS) Myths

Debunking 6 (ME/CFS) Myths

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is probably one of the most controversial health conditions in the medical community with many misconceptions and myths.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling clinical condition characterized by unexplained and persistent post exertional fatigue accompanied by a variety of symptoms related to cognitive, immunological, endocrinological, and autonomous dysfunction.

I thought it would be a good idea to dedicate an entire article to debunking some of the most common myths surrounding ME/CFS and highlight some other risk factors, pathophysiology and more.

I will be using and referencing a range of studies to support my points, so that individuals who are interested can go into the research themselves.

1. Psychogenic Myth

Probably the most common myth and misconception is the incorrect belief that Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a psychological disorder or has psychogenic origin.

A study on the effect that comorbid medical and psychiatric diagnoses had on ME/CFS patients found that “psychiatric status is not an important causal contributor to CFS” and that the presence of co-existing psychiatric diagnoses does not impact on any aspect of the phenomenology of ME/CFS.

Therefore, psychiatric status is not an important causal contributor to CFS.

In contrast, the presence of other medically unexplained syndromes (irritable bowel syndrome; fibromyalgia and/or multiple chemical sensitivity) do impact on the illness such that the more of these that co-exist the more health-related burdens the patient has. [1]

2. CBT As A Treatment For ME/CFS

Cognitive Behavioral Therapy (CBT) has long been considered the “gold standard” of “treatment” for ME/CFS patients from allopathic medicine, despite the fact that CBT is no longer considered to even be an effective treatment.

Analysis of the 2008 Cochrane review of cognitive behavioural therapy for chronic fatigue syndrome shows that seven patients with mild chronic fatigue syndrome need to be treated for one to report a small, short-lived subjective improvement of fatigue.

This is not matched by an objective improvement of physical fitness or employment and illness benefit status.

Most studies in the Cochrane review failed to report on safety or adverse reactions. Patient evidence suggests adverse outcomes in 20 per cent of cases. If a trial of a drug or surgical procedure uncovered a similar high rate, it would be unlikely to be accepted as safe.

It is time to downgrade cognitive behavioural therapy to an adjunct support-level therapy, rather than a treatment for chronic fatigue syndrome. [2]

3. Graded Exercise Can Be Very Harmful For ME/CFS Patients

Aside from CBT, the most common treatment at least up until recently was graded exercise for ME/CFS patients.

Depending on the severity of ME/CFS any level of activity can be a potential disaster and it is vital for allopathic physicians to really get up to speed here to understand just how functionally debilitated most ME/CFS patients actually are.

From my own experience I can say that most doctors, GP’s, physiotherapists and even cardiologists I have come across do not understand just how harmful any level of activity and exercise can be for ME/CFS patients or PEM(post exertional malaise).

Psychiatrists and GP’s have for years been recommending far too intense or frequent exercise. One proponent I seen was claiming ME/CFS patients should go for a walk several times every day, even if they felt unwell or developed symptoms. This is a classic example of a doctor who doesn’t understand how energy and functionally depleted this patient group actually is.

ME/CFS is not a condition you can “power” through, these symptoms are there for a reason and from my own experience are usually an indicator that you have exerted yourself too much and gone far beyond your “pool of energy” or energy reserves as I like to call them.

Symptoms such as heart palpitations, hypoglycemia, muscle cramping, shortness of breath and so on are extremely common in ME/CFS patients and have physiological basis such as extreme intracellular magnesium and/or potassium deficiency i.e in regards to heart palpitations and muscle cramping.

This has been a huge problem for years now because most physicians truly believe that most ME/CFS patients are “healthy” and this is of course reinforced by normal basic blood work, which is not sufficient diagnostic testing for detecting these type of disorders which have a strong IO&NS pathophysiology “underpinning” them.

I am of the belief that exercise can be both hugely dangerous and at the same time is extremely important for ME/CFS patients, its about getting the correct balance of activity to rest to how much energy pool you currently have, often increased nutritional requirements are vital I have found personally(magnesium, B-complex vitamins, Vitamin C for adrenal/catecholamine support, mitochondrial nutrients(coq10) etc) and of course more than likely increased rest to compensate.

But again this is highly dependent on the severity of ME/CFS in the individual patient because this is not a “one-size fits all” scenario we are dealing with here. These are highly complex and multi-factorial disorders of the human body, where each patient is also physiologically and genetically unique.

Most physicians wouldn’t dare to recommend or introduce exercise in a patient who came in complaining of severe general burnout due to life or mental health problems, yet these doctors seem to genuinely believe that the likes of graded exercise or worse intense exercise is a healthy option or even some kind of “treatment” for someone who is completely bed ridden debilitated with often years of extreme fatigue and severe debility.

I believe that resistance training may actually be a potentially better choice of exercise for ME/CFS patients than aerobic exercise initially due to the myriad of knock on mitochondria related benefits that resistance training has shown. Research has found that resistance training can not only increase mitochondrial biogenesis, but it can actually compensate for mitochondrial deletions and increase mitochondrial skeletal capacity.

It is also worth noting that there is research which has found both small and large artery endothelial dysfunction to be common in ME/CFS patients, so again there is a cardiovascular origin to many symptoms here that goes missed and is related to oxidative stress disorder once again.

4. Co-Enzyme Q10 Deficiency & Early Cardiovascular Mortality

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a medical illness characterized by disorders in inflammatory and oxidative and nitrosative (IO&NS) pathways.

Coenzyme Q10 deficiency has been shown to play a role in the pathophysiology of ME/CFS and that symptoms, such as fatigue, and autonomic and neurocognitive symptoms may be caused by CoQ10 depletion.

Lowered levels of Coenzyme Q10 are also considered to be an independent predictor and another risk factor explaining the early mortality via cardiovascular disorder seen in ME/CFS patients.

It highly aggravates me that the serious nature of ME/CFS has been downplayed by allopathic doctors when the research has found that ME/CFS patients have an early mortality from cardiovascular disorder (CHF) typically 25 years younger the general population. YIKES!…

The findings that lower CoQ10 is an independent predictor of chronic heart failure (CHF) and mortality due to CHF may explain previous reports that the mean age of ME/CFS patients dying from CHF is 25 years younger than the age of those dying from CHF in the general population. [3]

I personally have tested and found out that I have severe plasma Coenzyme Q10 deficiency, so this is a topic and area I am hugely passionate about as a ME/CFS patient myself.

5. Basic Blood Work Is Not Sufficient Diagnostic Testing For ME/CFS

One of the most disingenuous aspects of allopathic medicine is that doctors put a great deal of over relience in basic blood work.

Basic blood work is excellent for a basic check of health, nobody can discount that and due to the wide range of basic markers is often decent at detecting even serious diseases.

However, it is by far the bee all and end all for diagnosing or detecting health problems with a IO&NS pathophysiology/redox & antioxidant status or even when it comes to screening true nutritional status.

Allopathic medicine greatly neglects screening true nutritional status and this is because they overly rely on poor diagnostic tests such as serum magnesium for evaluating nutrition.

Research has found that serum magnesium only accounts for a mere <1% of total-body magnesium status and thus isn’t a very reliable marker for assessing true magnesium status.

A study from 2003 on magnesium metabolism and it’s disorders stated that the correlation between serum total magnesium and total body magnesium status is poor. [4]

Another study from 2005 evaluating magnesium status and its role in hypertension also stated that “serum magnesium does not reflect true magnesium status as do intracellular magnesium measurements.”. [3]

The same can be said for the likes of Vitamin B12, serum testing is not all that accurate and high rates of functional B12 deficiency often go undetected.

6. ME/CFS As A “Multi-Systemic Metabolic-Inflammatory Disorder”

The final part I want to finish up on in the article and probably the most important to me is trying to highlight one of the most vital aspects that “underpin” the pathophysiology of ME/CFS, which is disorders of IO&NS pathways.

Numerous studies have shown that depression and ME/CFS are characterized by shared aberrations in inflammatory, oxidative and nitrosative (IO&NS) pathways, like systemic inflammation and its long-term sequels, including O&NS-induced damage to fatty acids, proteins and DNA; dysfunctional mitochondria; lowered antioxidant levels, like zinc and coenzyme Q10; autoimmune responses to neoepitopes formed by O&NS; lowered omega-3 polyunsaturated fatty acid levels; and increased translocation of gram-negative bacteria.

Some IO&NS-related pathways, like the induction of indoleamine 2-3-dioxygenase, neurodegeneration and decreased neurogenesis, are more specific to depression, whereas other pathways, like the 2′-5′ oligoadenylate synthetase/RNase L pathway, are specific to ME/CFS. [6]

There is evidence that disorders in inflammatory and oxidative and nitrosative (IO&NS) pathways and a lowered antioxidant status are important pathophysiological mechanisms underpinning myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Important precipitating and perpetuating factors for ME/CFS are (amongst others) bacterial and viral infections; bacterial translocation due to an increased gut permeability; and psychological stress. [7]

References

[1] The effect of comorbid medical and psychiatric diagnoses on chronic fatigue syndrome

[2] Cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective. Re-analysis of a Cochrane review

[3] Coenzyme Q10 deficiency in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is related to fatigue, autonomic and neurocognitive symptoms and is another risk factor explaining the early mortality in ME/CFS due to cardiovascular disorder

[4] Magnesium Metabolism and its Disorders

[5] [Magnesium and hypertension]

[6] An intriguing and hitherto unexplained co-occurrence: Depression and chronic fatigue syndrome are manifestations of shared inflammatory, oxidative and nitrosative (IO&NS) pathways

The information in this article has not been evaluated by the FDA and should not be used to diagnose, cure or treat any disease, implied or otherwise.



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