International ME/CFS conference airs exciting research prospects

Studies have shown that about four in every 1000 people in any population suffer from ME/CFS.
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Studies have shown that about four in every 1000 people in any population suffer from ME/CFS.

It's an illness that comes with a lot of unanswered questions and can turn a person's life upside down.

But after a recent international ME conference in London, ME/CFS patients are closer to a future of understanding and recognition than ever before.

Dr Rosamund Vallings​, of Howick Health and Medical Centre, in Auckland, attended the conference in June and has returned home excited about the prospects of various international research paths.

Vallings has more than three decades experience in the field of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), and was one of 50 top research scientists and clinicians from around the world who were invited to the event.

Organised by Invest in ME Research, the conference provides an opportunity for people to share information on the illness and the current status of diagnosis, treatment and present and future biomedical research possibilities.

"Over the years the research has grown and thousands of research papers are being published," Vallings says.

"The illness is now classified by the World Health Organisation as a neurological condition, so it's a recognisable, physical illness and is no longer looked upon as all up in your head."

Vallings says despite limited information on the illness, it's known that there is a genetic background to it and the majority of cases are triggered by a viral illness.

"That viral illness can be anything from a simple cold through to a severe illness like meningitis.

"The immune system fires into action to kill the virus, and then when the virus is finally flattened a person will normally recover," she says.

"However, with people who develop ME, instead of the immune system quietening itself off and going into rest, it stays very hyped up and all those symptoms continue."

Typical ME/CFS symptoms are flu-like, such as headaches, achy pain, a frequent sore throat, and tender lymph nodes in the neck and armpits.

Vallings says there is no set time frame that a person might suffer from the illness.

"Some people will be recovered in six months and others in two-three years, which is the average recovery time. Some people will go on a very long term."

Studies have shown that about four in every 1000 people in any population suffer from ME/CFS.

Vallings says out of the 18 countries represented at the conference, one of the most interesting speakers was Professor Olli Polo from Finland.

"He talked a lot about the physical abnormalities which we should be looking at and using to prove that they really have got a physical illness.

"Some of the signs he mentioned were things like very low blood pressure, loose-jointedness, a flabbiness of the tissue, and the tendency to be light headed if you are standing for any length of time.

"It was good to have something to go on. It gave GPs at least something you could go home and check on your patients."

Vallings says some of the most exciting research is from the Gold Coast in Australia, by Professor Sonya Marshall-Gradisnik and Dr Donald Staines.

"They are very close, and the best news we have had is on the so-called bio-marker front, a blood test that can prove whether or not you have this illness.

"They're trying to get other centres around the world to replicate the work, because if the work can be replicated and proven then we are very close to a blood test."

Researchers also spoke on the link between the microbiome, the immune system and the brain, and how this could be influencing the onset of ME/CFS; a link between autoimmunity and ME/CFS; and the positive findings on the drug Rituximab​.

"There is a lot of thinking now that this might be an autoimmune illness, but we're nowhere near proving that," Vallings says.

"Professor Carmen Scheibenbogen​ from Berlin found that the autoimmune likelihood can damage your central nervous system, so your brain ability is very sluggish, and this could account for most, if not all of the symptoms.

"She talked about the drug Rituximab​ that has been researched by the Norwegian team and flattens autoimmune activity. 

"It has been shown in some of the studies so far to be very successful in about half to two-thirds of patients with chronic fatigue syndrome.

"We may be onto a winner, or we may not, we don't know yet. It's still very much in the pipeline. But the good news is the work is going on and it is well funded."

Vallings says the research proposals still need to be trialled and authenticated.

"You have to sit back and let the research move on, frustrating though that is for people who are desperate for treatment. But there is huge hope out there with this drug.

"There is good, convincing evidence that we are moving in the right direction."