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Emerge Symposium Report

Wednesday 5 June 2019


From society member Lorraine Beard:



ME/CFS: The biomedical basis, diagnosis, treatment and management

By Lorraine Beard
5 June 2019

In March 2019 an impressive range of national and international researchers, clinicians and patient representatives gathered for a 3-day symposium organised by Emerge Australia entitled “ME/CFS: The biomedical basis, diagnosis, treatment and management”.

Below are some general points that stood out for me:

  • ME/CFS is a very serious long-term illness, but it is extremely unlikely to be a single condition. It is either a number of different conditions, or an illness with different subgroups.
  • The great heterogeneity in ME/CFS is a challenge for research, and unless patients are subgrouped, studies are unlikely to yield useful results.
  • Misdiagnosis can also be a problem. It is generally assumed that ME/CFS cannot occur in a person who has another debilitating disorder. What about possible comorbidities, e.g. ME/CFS and multiple sclerosis?
  • Many and diverse biological abnormalities have been reported in ME/CFS, no doubt reflecting that multiple systems are affected. They’re like pieces of a jigsaw that has yet to be put together.
  • Neuro-hormonal-immunological interactions are extremely complex and not well understood.
  • Evidence of neuroinflammation is being reported and neuro-immune interactions may prove to be an important key, at least in some patients.
  • We do not know whether any of the reported research findings are primary or secondary, i.e. cause or effect. Collaboration between researchers and clinicians is essential.
  • The amount of data now coming to light is mind-boggling. Computerised analyses can be extremely helpful.
  • We need to recognise that many studies have used small patient cohorts, and patients who are differently defined, at different stages of their illness, of different ages, sex, with different comorbidities and treatments, and exposed to different environmental factors, including infections.
  • It’s very important to consider the quality of the biological samples tested and the scientific methodology used. A test needs to be reliable and valid. Appropriate statistical methods must be used to analyse results. Means and standard deviations are often not suitable.
  • Validation and replication of research findings is essential, including replication using sufficiently large cohorts of patients.
  • It seems that in ME/CFS, the body is doing its best to cope, with many systems interacting to hold together, but in a pathological state.
  • Some genetic factors have been reported; however, a cascade of stressors/events seems necessary for a person to develop ME/CFS.
  • Graded Exercise Therapy (GET) is not suitable for ME/CFS although it’s still recommended in Australian medical guidelines. It’s “malpractice”, “barbaric” and “makes patients worse.” However, exercise within a patient’s energy envelope is appropriate.
  • Patients can exercise in their minds. Even imaging oneself exercising can have physiological benefits.
  • Patients need respect, diagnosis, and support. It is very helpful for patients to be given a diagnosis and to hear a doctor say, “You have ME/CFS,” and also to have the diagnosis in writing. Patients with can benefit from not having to prove they’re ill.
  • The Quality of Life scores (SF-36) for ME/CFS are well below those for most other significant diseases which have QOL scores closer to the general population than severely ill ME/CFS patients.
  • Two simple ways to help determine if a patient has done too much are: (1) plotting the morning pulse rate for the next 5-7 days – a rise indicates that the body hasn’t recovered; and (2) if the patient can’t do tomorrow as much as they’ve done today, they’ve done too much.

Prof. Ron Davis warned about self-experimenting with critical biochemical pathways, e.g. increasing tryptophan could lead to high serotonin, then a decrease in the number of serotonin receptors and a worse condition; supplementing selenium when levels are low could cause high levels which may be more dangerous than low levels.

Overleaf, I have tried to summarise some of the points made by specific speakers, with sincere apologies for any misunderstandings or misrepresentations.


PDF Full report (PDF, 4 pages, 150 KB)



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