CFS/ME a brain and nerves issue?

I assume this is based purely on the current World Health Organization's International Classification of Diseases (ICD). Myalgic Encephalomyelitis (ICD 10 G93.3), which includes CFS, is classified as a neurological disease. The current ICD-10 was endorsed in 1990 and has been used since 1994. ME/CFS are included under G90-G99 Other disorders of the nervous system and more specifically under G93 Other disorders of the brain The disorder (or disorders, since they are widely considered to be different) is currently listed as “benign myalgic encephalomyelitis” even though the word “benign” is no longer used elsewhere.  

That is 100% the current classification in ICD-10 (nothing whatever to do with MS)... but of course the WHO classification will be updated in 2017. There is some conversation after an article I wrote last week. Of particular interest are the comments made re the immensely interesting DX Revision Watch website. Have a look. 

Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

Hi everyone - This came out in the Daily Mail in October 2014 - you may have to cut and paste and put into your search engine as I do not know how to put in links here.  It makes interesting reading - the research is in its infancy, but they are extending it.

http://www.dailymail.co.uk/health/article-2813823/Is-proof-chronic-fatigue-DOES-exist-Scientists-three-differences-brain-suggest-condition-not-just-mind.html

My other reply is being moderated as I put a link in there.  But if you google these words  Daily Mail ME/CSF and look for October 2014 which is usually at the top of the search it is suggesting the following:

Study at Stanford University examined MRI scans of CFS patients comparing them to those of healthy volunteers

Found three distinct differences in different parts of the brain 

CFS patients found to have lower levels of white matter - which carries information and signals between different parts of the brain 

A tract connecting the frontal and temporal lobes was found to be abnormal

And grey matter - which processes information - in those two areas of the brain was thicker in CFS patients 

Hopes the discovery will lead to better diagnosis and treatment of condition

Adds weight to debate over legitimacy of the condition, which is constantly questioned and mistaken as being hypochondria  

The brains of those diagnosed with chronic fatigue syndrome are distinctly different to those of healthy people, scientists have discovered.

The study promises to add weight to the debate over the legitimacy of the condition, which is repeatedly called into question.

A team of researchers at Stanford University School of Medicine believe their findings could lead to more definitive diagnoses of the syndrome and better treatments.

And it is thought the study could help point to an underlying mechanism governing the disease.

It is not uncommon for CFS patients to face misunderstanding of their condition, plagued by suspicions of hypochondria.

But the abnormalities identified in this study, published in the journal Radiology, will, it is hoped, go some way to helping resolve those ambiguities.

Lead author Michael Zeineh, assistant professor of radiology, said: 'This is a very common and debilitating disease.

'It's very frustrating for patients, because they feel tired and are experiencing difficulty thinking, and the science has yet to determine what has gone wrong.

'Using a trio of sophisticated imaging methodologies, we found that CFS patients' brains diverge from those of healthy subjects in at least three distinct ways.'

The condition affects between one and four million in the US and millions more worldwide.

Putting a definitive figure on the number of sufferers is difficult, because CFS can be difficult to diagnose.

While all patients share a common symptom - crushing, unremitting fatigue that persists for six months or longer - additional symptoms can vary from one patient to the next, often overlapping with other conditions. 

Professor Jose Montoya, the study's senior author, said: 'CFS is one of the greatest scientific and medical challenges of our time.

'Its symptoms often include not only overwhelming fatigue but also joint and muscle pain, incapacitating headaches, food intolerance, sore throat, enlargement of the lymph nodes, gastrointestinal problems, abnormal blood-pressure and heart-rate events, and hypersensitivity to light, noise or other sensations.' We asked ourselves whether brain imaging could turn up something concrete that differs between CFS patients' and healthy people's brains. And, interestingly, it didThe combination of symptoms can devastate a patient's life for decades.

In an effort to identify the syndrome's underlying mechanisms, Professor Montoya has been following 200 CFS patients for several years.

'In addition to potentially providing the CFS-specific diagnostic biomarker we've been desperately seeking for decades, these findings hold the promise of identifying the area or areas of the brain where the disease has hijacked the central nervous system,' he said.

Dr Zeineh added: 'If you don't understand the disease, you're throwing darts blindfolded.

'We asked ourselves whether brain imaging could turn up something concrete that differs between CFS patients' and healthy people's brains.

'And, interestingly, it did.' 

The researchers compared brain images of 15 CFS patients chosen from the group Professor Montoya has been following, to those of 14 age and sex-matched healthy volunteers.

The volunteers had no history of fatigue or other conditions causing symptoms similar to those of CFS. 

Their analysis yielded three noteworthy results.

First, an MRI scan showed that overall white matter content of CFS patients' brains was reduced compared to that of healthy participants' brains.[Researchers at Stanford University found three differences after performing MRIs on a group of CFS patients and a control group of healthy volunteers with no history of CFS. File picture]

+2Researchers at Stanford University found three differences after performing MRIs on a group of CFS patients and a control group of healthy volunteers with no history of CFS. 

The term 'white matter' denotes the long, cable-like nerve tracts carrying signals and information through dispersed concentrations of 'grey matter' - which specialise in processing information.

While Dr Zeineh said the first finding wasn't entirely unexpected, the second was.

Using advanced imaging techniques, he and his colleagues identified a consistent abnormality in a particular part of a nerve tract in the right hemisphere of CFS patients' brains.

The tract, which connects the frontal lobe with the temporal lobe, assumed an abnormal appearance in CFS patients. 

Furthermore, Dr Zeineh said the study identified a strong link between the degree of abnormality in the patient's tract and the severity of their CFS.

The third finding highlighted a thickening of the grey matter in the frontal lobe and temporal lobe in CFS patients, compared with the control group.

Dr Zeineh said while their results are 'quite robust', more research is needed. 

'This study was a start. It shows us where to look,' he said, adding the team are planning a substantially larger study.

They have an example of the brain matter in pictures also in the article - but for those who can not find it I have cut and paste here for you to read.

 

I was mis-diagnosed with ME for 5 years before discovering I actually had a brain tumor that was causing all my symptoms so classifying it as a brain issue is entirely appropriate in my case.

I think there has been some research to suggest that ME is associated with swelling in parts of the brain although not absolutely conclusive as yet. Don't remember exactly which study this was but can remember reading about this somewhere.