ME/CFS Facts VS Fiction

ME/CFS is a poorly understood illness within society therefore this ME Awareness month I wanted to present many misconceptions related to this disease to help further awareness.
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.

 Here are some key issues researchers have found:

Abnormalities in cellular energy production Fluge and Mella (2016), Armstrong et al. (2015), Naviaux et al., 2016, Armstrong (2017b)

Measurable alterations in the functions of the cardiovascular system and autonomic nervous system:

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
This falsehood was perpetuated, falsely by psychiatrists, and then media, who believed that ‘false illness beliefs’ and simple ‘deconditioning’ enables patients to remain poorly. It was stigmatised in the 1980s by the degrading term ‘Yuppie Flu’ in the media, meaning those who became ill with it were affluent, lazy and didn’t want to work (a completely false term as ME/CFS is non-discriminatory). A UK government-funded study in 2005 called the PACE trial enabled this false narrative to continue in which it claimed that Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) could either cure or vastly improve those with ME/CFS. This trial has since been vastly discredited. The authors have been found to have moved goalposts within the trial to suit their narrative, amongst many other factors leading to the simple fact that ‘the pre-registered protocol was not adhered to‘ (see below). The outcomes have caused great harm to those suffering ME/CFS and their treatment and have subsequently greatly reduced funding for research.

“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.”

Carolyn E Wilshire, Tom Kindlon – Response: Sharpe, Goldsmith and Chalder fail to restore confidence in the PACE trial findings

"When the full details of the PACE trial become known, it will be considered one of the biggest medical scandals of the 21st century."
Carol Monaghan MP

David Tuller, an investigative journalist writes:

“The other major flaws that make it impossible to assess the validity of their safety claims are related to those that affected the PACE trial as a whole.  In particular, problems related to four issues affected their methods for reporting harms: the case definition, changes in outcome measures after the trial began, lack of blinding, and encouraging participants to discount symptoms in a trial that relied on subjective endpoints.” – David Tuller (Trial By Error – Did The PACE Trial Really Prove That Graded Exercise Is Safe?)
“One quirk of PACE was that 13% of participants were already “within normal range” or “recovered” on the key variable of self-reported physical function when they entered the trial. This perplexing paradox was not disclosed in the paper. As far as I have seen, the PACE investigators have never admitted that this overlap is problematic or raises any questions of interpretation..Regarding fatigue in connection to other diseases, no credible authority (as far as I know) has suggested that CBT for MS-related fatigue will “reverse” the MS and lead to “recovery” from it. But that is the claim that has routinely been made for this therapy in the domain under discussion, including in the PACE trial. The comparison with MS-related fatigue is not readily applicable to the debate.” David Tuller Trial By Error: The 2018 PACE Reanalysis And The SMC’s Expert Appraisals
As established in the earlier section ‘ME/CFS Is A Complex Chronic Disease’, ME/CFS is a disease that affects multiple body systems and this cannot be willed or exercised away. ME is not ‘all in the head‘, it is not created by or indeed kept in place by ‘false illness beliefs.
ME/CFS Is A Neurological Illness – True
The World Health Organisation classifies ME/CFS as a neurological illness. Many of the symptoms of ME/CFS are neurological.
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

However, a 2019 study, estimated that there are 65 million people with ME/CFS worldwide.

“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

To put that into context:
Parkinson’s disease estimated prevalence worldwide: 10 million (
Multiple Sclerosis estimated prevalence worldwide: 2.5 million (
Rheumatoid Arthritis estimated prevalence worldwide approx: 20 million (rheumatologyadvisor)
ME/CFS Can Affect People In Varying Severities – True
ME/CFS can range in severity. This can range from mild, moderate, severe, very severely affected.
Some in the more mild-moderate category may be able to continue to work or socialise, or at least to some degree. This does not, however, mean that they do not feel sick when doing so and in fact, they will feel worse for it if they suffer Post-Exertional Malaise; a worsening of symptoms from activity.
Those in the more moderate to severe category are housebound and bedbound. They require care for the majority of activities including self-care, help to address their care needs around the home.
Severe ME/CFS patients are often fully restrained to the house and beds and require care for all needs.
Very severe ME/CFS need round the clock care and often require feeding tubes.
Many ME/CFS suffers require the use of mobility aids.
In all levels of ME/CFS Post-Exertional Malaise, PEM (see next section for further information), is a factor. This being that a person with ME/CFS feels a worsening of symptoms after activity. Therefore you may see a person with ME/CFS and they may appear to be ‘ok’ however, there will undoubtedly be a cost in terms of suffering for this person at a later date.
People with ME/CFS can and do look ‘ok’ they can also look very unwell. It is an invisible illness.
The Hummingbird Foundation for ME has an ability and severity scale for further information which can be found here.
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.)


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

PEM is a sudden worsening of symptoms, a crash, that can be unjust for the activity undertaken. For some, simply watching a TV programme, brushing their teeth, eating, or having a conversation can bring this on. The length of a PEM episode can be hours, days, weeks, months and longer.
This is why exercise can be particularly harmful for ME/CFS patients (of which exercise studies on those who are most able to take part-have found reduced blood flow to the brain and heart, reduced oxygen uptake in haemoglobin, reduction in absolute heart recovery and more. See further reading here.)
Me/CFS Doesn’t Really Affect Someone’s Quality of life – False
As stated in the 2015 report by the National Academy of Medicine (NAM, previously called the Institute of Medicine), ME/CFS is a “serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities” of patients and in its severe form, “can consume the lives of those whom it afflicts [1]. ”can leave patients “more functionally impaired than those with other disabling illnesses, including type 2 diabetes mellitus, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease.”
"We've documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic pulmonary disease."
Dr William Reeves

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

"The whole idea that you can take a disease like this and exercise your way to health is foolishness. It is insane.
Dr Paul Cheney

Below are some biomedical research studies summarised by ME Action of the effects of exercise on patients with ME/CFS.

They state: “Note that exercise studies are performed on minor or minor-moderate-presenting people with ME.
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.

    ME Research Summary 2019 ME Action

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.

"I have a wish and a dream that medical and scientific societies will apologise to their ME patients."
Dr Jose Montoya MD

“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
As yet, there is sadly no treatment or cure for ME/CFS. However, there are many incredible scientists working in a collaborative effort around the globe to end this awful illness. The Open Medicine Foundation state “OMF, our stellar Scientific Advisory Board, with 2 Nobel laureates, and our international Research Teams are working tirelessly to address this crisis, raising awareness, raising money and driving state of the art research with Collaborative Research Centers.” Open Medicine Foundation Which is beyond exciting for the ME/CFS community.
While patients wait the most effective management plan is pacing, which in simple terms means living within ones means and not pushing yourself to the point of a crash (a worsening of symptoms). This is not an easy thing to achieve as in some cases the slightest thing can cause a crash.
However, you can help!
If you wish you support someone you know with ME/CFS simply asking how you can help them can be of great benefit. Can your visit be less taxing to their symptoms perhaps? Is there support you can offer around the house? At its most simple, reading this article and having a greater understanding of the illness is perhaps a great help in itself.
"These ME/Cfs patients are not crazy. Our findings validate their symptoms-that their illness is real and has a biological basis." Dr Jose Montoya
Dr Jose Montoya MD

If you’d like to read more, here are many resources:

ME/CFS Facts Vs Fiction
Pin this article to Pinterest Via this image!

Please consider sharing this article to help spread awareness and aid further understanding of ME/CFS! Thank you!

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

Glassford JA. The Neuroinflammatory Etiopathology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Front Physiol. 2017;8:88. Published 2017 Feb 17. doi:10.3389/fphys.2017.00088
National Academy of Medicine, National Academies of Science (2015) Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.
Print Friendly, PDF & Email
  1. 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…..

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.