How Does ME Research Fare? Check Out these Piecharts.

Share on facebook
Share on twitter
Share on email

Research scientist, Dr Mark Guthridge, PhD, from Melbourne Australia created this piechart to show that of these 13 diseases, people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have the worst quality of life but the least number of scientific publications in 2018.

Follow Dr. Guthridge on Twitter.


















In this piechart, Dr. Guthridge shows that ME/CFS has the least number of active clinical trials for 2018.

In this piechart, Dr. Guthridge shows that research has skewed towards the view that ME is a psychosomatic disease in the past 10 years. This piechart shows that the top 5 most influential scientific papers in ME/CFS research over the last 10 years (based on citations) are all based on behavioural research commanding more than 50 percent of the citations (red). Only 3 biomedical research papers made the top 10 with less than 25 percent of the citations (brown).

The issue of citations is tricky, however, since some citations may be critical of the work, while others are positive. A look at the 25 most recent citations, shows that 18 were positive, 6 were negative and 1 was neutral, meaning that favor still tips 3:1 in the direction of the research promoting a biopsychosocial model of ME.


There are major flaws with the methodology of the studies focused on behavioural research (in red), including:

  1. The most cited article – the Lancet’s PACE trial that compares pacing, CBT and GET – uses a definition that the Agency for Healthcare Research and Quality and the National Institutes of Health have said includes people with other conditions that needs to be retired because it can “impair progress and cause harm.”The PACE trial has received widespread criticism from the international scientific community. More than 50 published letters in leading scientific journals have raised serious concerns about the robustness of its claims regarding the use of Cognitive Behavioural Therapy and Graded Exercise Therapy for people with ME.
  2. The Institute of Medicine report dismissed the study regarding childhood trauma and CFS because it included an overrepresentation of people with depression and PTSD.
3. The study showing an “increase in prefrontal cortical volume” for people with CFS who underwent Cognitive Behavioural Therapy also poses several concerns as outlined in these comments made on the study:
Inge Bramsen’s comment:
The authors did not include a control group of patients receiving no treatment or a different treatment. Therefore, the increase in GMV cannot be attributed to the CBT treatment given. It is possible that the natural course of and fluctuations in the illness are responsible for this result.
Second, even if the results were indeed to be attributed to changes in lifestyle brought about by CBT, several questions still remain. To name a few, first, the increase in volume of <1% is very modest. Therefore, the question is whether, although statistically significant, this small increase is also of clinical significance.

Tom Kindlon’s comment points out that participants success needs to be measured by objective outcomes not survey questions prone to bias:

The person may feel better able to cope with daily activities because they have reduced their expectations of what they should achieve, rather than because they have made any recovery as a result of the intervention. A more objective measure of the effect of any intervention would be whether participants have increased their working hours, returned to work or school, or increased their physical activities’.
An INAMI report (2006) on the use of CBT (combined with GET) in over 600 CFS patients in Belgium found that while patients reported improvements on their fatigue scores, there was negligible change on the tests of exercise capacity and there was actually a worsening of their employment status (as measured by the amount of hours worked per week), both at the end of the intervention and at follow-up.
Also, a recent meta-analysis (Malouff et al., 2008) of the efficacy of CBT in treating CFS found an effect size of d = 0.48 (95% CI 0.27–0.69).
Share on facebook
Share on twitter
Share on whatsapp
Share on google
Share on email

2 thoughts on “How Does ME Research Fare? Check Out these Piecharts.”

  1. Bazia Ann Zebrowski

    This visual representation of the criminally low funding and research is much appreciated and should be impactful to anyone with a sliver of a heart.

  2. ME/CFS is a horrible affliction. I applaud all the people who are trying to get it noticed more and the research being done to try and find a cure. Heart disease is the leading cause of death for women, YET breast cancer gets the most notice and money. Why? Because of Susan Komen and the work she’s done to bring attention to it. Let the people who suffer from Chroic Fatigue Syndrome and their families and friends each do their part in spreading the word and make donations. It starts small but with everyone’s participation it will grow and grow. Thank you for reading this.

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

Sign petition To Fix ME/CFS tracking In US!

In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the

Read More »

NICE announces roundtable event to ensure implementation of ME/CFS guideline

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine

Read More »

#MEAction & 6 ME Orgs Call for CDC to Change How it Tracks ME/CFS

Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM).  Today, ME/CFS does not exist in the US ICD-10-CM. Instead,  most US doctors assign the code for chronic fatigue

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.


Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Scroll to Top