ME/CFS Is A Complex Chronic Disease –Truth
“Myalgic encephalomyelitis is a complex chronic disease that affects multiple body systems.
While funding for research and clinical care remains a serious concern, there is now a growing body of literature that identifies and explicates dysfunction in the immune, neurological, and energy metabolism systems in people with ME”.” -ME Action
In 2015 The National Academy Of Medicine declared ME/CFS to be a series, chronic, complex and systemic disease.
There are over 9000 bio-medical studies showing biological issues, in patients with ME.
•Abnormalities in cellular energy production Fluge and Mella (2016), Armstrong et al. (2015), Naviaux et al., 2016, Armstrong (2017b)
Reduced blood volume, Newton et al. (2016), Miwa & Fujita (2011), van Campen, Rowe, and Visser, 2018
Orthostatic Intolerance, Miwa et al. (2017)
•Neuroinflamation Nakatomi et al., 2014
•Changes in brain, reduction in both grey and white matter, Shan et al. (2016), Puri et al., (2012)
•Immunological issues, Cytokine, T cells, Natural Killer cells, B cells all shown to be affected in multiple studies. Also an altered immune response to infection.
It’s All In The Head – False
“the published analyses did not adhere to the pre-registered trial protocol.. that the evidence for the beneficial effects of CBT or GET was weak, and did not reach the threshold of statistical significance after correcting for the number of originally planned comparisons. Neither treatment significantly increased the rate of recovery. We also raised concerns about the trial’s heavy reliance on self-report measures, which introduces a significant source of bias when a trial is not blinded.”
David Tuller, an investigative journalist writes:
ME/CFS Is A Neurological Illness – True
Not Very Many People Have/Get ME/CFS –False
ME Action state: “An estimated 15-30 million people live with the disease worldwide.” – ME Action
“The latest worldwide prevalence rate projects that over 65 million patients suffer from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), an illness with known effects on the functioning of the immune and nervous systems.”¹ and that “These results show that a prevalence rate of 857/100,000 for ME/CFS is not unreasonable; therefore, it is not a rare disease, but in fact a relatively common one.”²
ME/CFS Can Affect People In Varying Severities – True
People With ME/CFS Are ‘Just Tired’ – False
There are two parts to this.
Tiredness vs fatigue:
Patients with ME/CFS suffer fatigue not tiredness and this fatigue is at a cellular level. You cannot simply rest or sleep away this level of fatigue. Studies have shown abnormalities in cellular energy production in people with ME, with amino acid metabolism, fatty acid processing and slowed cellular metabolism all affected. (Please see here for further information.)
PEM:
Second to this is Post-exertional malaise (which is commonly referred to as PEM) a standout symptom of ME/CFS.
The ME Association state that “Post-exertional malaise (PEM) is a delayed worsening of symptoms that occurs after minimal physical or mental activity. It has also been called ‘Post-exertional neuroimmune exhaustion’ (PENE). The key feature of PEM is that the malaise (extreme fatigue and flu-like symptoms) and other symptoms experienced are not in proportion to the amount of activity that has been done.” – ME Association
Me/CFS Doesn’t Really Affect Someone’s Quality of life – False
ME Action write, in reference to this study, that “NAM also reported that patients seldom recover and most are unable to work, resulting in an economic impact to our country (America) of 18-24 billion dollars a year in lost productivity and medical costs. Yet, in spite of this, the NAM report cited a “paucity of research” and “remarkably little research funding” and noted that the medical community “generally still doubts the existence or seriousness of this disease.”
Exercise ‘Cures’ ME/CFS – False
As pointed out earlier in the article sadly the misinformation regarding exercise as a cure has been perpetuated throughout the media for too long. Simply put as yet, there is no cure for this terrible illness.
“Given the range of abnormalities that have been found with exercise in ME/CFS subjects, it would not be unexpected if programs encouraging increased physical activity resulted in adverse reactions for some patients. Indeed, observational studies have shown that physical exertion of various intensities can provoke a diverse array of symptoms in ME/CFS such as fatigue, light-headedness, muscular/joint pain, cognitive dysfunction, headache, nausea, physical weakness, trembling/instability, insomnia, and sore throat/glands.” Tom Kindlon – Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Below are some biomedical research studies summarised by ME Action of the effects of exercise on patients with ME/CFS.
Severe patients may be incapable of exercise. Metabolism is measured via the products of respiration during testing, and some clinicians or researchers may gather additional information about energy metabolism through venous or arterial blood sampled at intervals during the test. Cardiopulmonary exercise testing (CPET) is an objective measure that cannot be ‘fooled’ by low effort on the part of the patient.” ME Action
Post Exercise:
- Both Neary et al., 2008; and Peterson et al., 1994 found reduced blood flow to the brain and heart in people with ME.
- Reduced oxygen uptake in haemoglobin (Miller et al., 2015) and reduced oxygen use on second-day exercise testing (Jones et al., 2012; Keller, Pryor, & Giloteaux, 2014) were found in people with ME.
- People with ME showed differences in maximal oxygen use not caused by a general lack of physical activity/deconditioning (Vermeulen, & Vermeulen van Eck, 2014)
- Reduction in absolute heart rate recovery after single-day cardiopulmonary exercise testing was found in people with ME (Moneghetti et al., 2018)Keller’s work shows the difference in ME/CFS patient function on their first exercise test versus their second, 24 hours later (Keller et al., 2014 — Inability of myalgic encephalomyelitis/ chronic fatigue syndrome patients to reproduce VO2 peak indicates functional impairment)
- Gene expression post-exercise – Light et al., 2009: Light’s group found different gene function after exercise in patients, including in genes related to immunity, metabolism, and the nervous system. Genes with increased expression included those responsible for regulating function of the heart, cell death, and inflammation. In order to carry out the same actions, people with ME may have to exert themselves far more than healthy individuals. Genes activated during exercise, effort, or as a result of painful sensations may be activated significantly more in people with ME than in healthy controls performing these same activities.
- Second-day CPET and VO2 – Snell et al., 2013, Keller et al., 2014, and Vermeulen & Vermeulen,
2014: Post-exertional malaise, or a worsening of all symptoms after exertion with delayed recovery,
is considered the cardinal feature of ME/CFS. However, patients do not always experience the consequences of PEM right away; they may experience a ‘crash’ 8, 24, or 48 hours after the initial exertion.Snell et al. (2013) found that, while a single exercise test showed no noticeable differences between CFS patients and controls, a second test performed 24 hours later showed significant abnormalities in oxygen use and how hard patients were able to work. Keller (2014) also found significant differences in ability to perform during a second test.
Vermeulen et al. (2014) compared sedentary controls (active less than 1 hour / week) to ME/CFS patients to show that these findings were not merely a matter of low activity level (deconditioning). O2 extraction in people with ME was still found to be less than half that of inactive controls.
A two-day cardiopulmonary exercise test can be used to objectively identify post-exertional malaise, the cardinal symptom of ME.
Kids With ME/CFS Are Just Lazy – False
ME/CFS is the most common cause for child absence in schools.
“Research has indeed shown ME to be the biggest cause of long-term sickness absence from school and recent epidemiology shows that as many as one per cent of school-age young people are affected by the illness.
Children can become so ill they are confined to bed and may have to be fed by tube. Fifty-seven per cent of children become bedridden at some stage and many more are too ill to go to school.” – Patrica Wells ME Assosation
On top of this many, many parents face accusations of harm and neglect, of facilitating the illness and this is simply cruel and very untrue. Parents have and are being faced with having children taken away from them, other children forced into Graded Exercise programmes. Children with ME/CFS are not lazy, they are very sick and require understanding and support.
Patients with ME/CFS Have Been & Are Treated Poorly By The Medical Profession – True
Sadly it is true that many patients with ME/CFS have and do face unfair medical neglect and harm due to ignorance of the severity of the disease. Many have experienced medical gaslighting, most feel they have little to no support. In order for this to change the true nature of this disease needs to be taught in medical schools and further education and care resources addressed to end this ignorance and harm.
“Individuals with ME/CFS can face many challenges and have not always been treated as well as they should have been by healthcare professionals (76,122,228-232). Many feel that their symptoms have been downplayed and their negative experiences of some treatments ignored. This can lead to a mistrust of the medical profession. Furthermore, healthcare professionals who strive to help their patients cannot do so without assessing risks versus benefits for each intervention they prescribe. To do this suitably, they need good data on harms. Greater vigilance for harms could restore patient trust and assist clinicians in adhering to the maxim, “Primum non nocere” (first, do no harm).” Tom Kindlon – Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
There Is No Treatment Or Cure – True
If you’d like to read more, here are many resources:
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¹Comprehensive Circulatory Metabolomics in ME/CFS Reveals Disrupted Metabolism of AcylLipids and Steroids. Arnaud Germain et al, 2020
²Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning.Valdez AR et al, 2019
This is great Amy, I can’t wait for the Pace trial to be recognised for the flaws in the study.
Some of these ‘truths” are just heartbreaking…..
Me either and for the NICE guidelines to FINALLY be changed!!