Latest CFS Research – we are different!
I remember the 6 months or more of diagnosis only too well. Everything else must be ruled out before a diagnosis of Chronic Fatigue Syndrome can be given. That means a lot of tests, a lot of specialists and a lot of prodding around! In the early days it’s easy to get caught up in the ‘why’…. Why did this happen to me? What caused this? What have I been doing wrong? Soon you are way too exhausted to bother about the ‘why’ and focus is only on survival…. How do I get better?
Back 12 years ago when I was diagnosed, the ‘why’ was about as sketchy as the ‘how’.
I didn’t understand the reasons I was being given at the time; not the medical speak for what was happening to my bodily processes… but there were possible causes such as environment, pollution, stress, over-exercise, and emotional trauma that could have been combined into a ‘why’ that potentially felt relevant for me at that time. It was confusing though because I had been to counselling for failed fertility treatment and thought I was coping with the idea that I would probably not be a mum. So it seemed a bit harsh that my entire body was shutting down based on that…. but then I think that’s where some of the other causes may have contributed. I was exercising a lot, I was stressed from being in a new country, not knowing anyone and not having a job, and I didn’t realise that I had chosen an apartment building that was only meters away from an underground road tunnel outlet (car exhaust fumes).
Information was a little less certain on how to get better. I was lucky enough to find a really good specialist who lived and breathed CFS. But that also meant he was really busy, not just with patients and trying to keep up with new knowledge and medical advancements, but also as a contributor to findings and research. He talked through a plan for addressing the internal ‘screw up’ that was going on inside me…. but much of it was hard to comprehend. Complicated enough…. but for someone who could hardly string thoughts together, who couldn’t find words, felt faint and nauseous all the time, and who’s memory was on the blink (like an old black and white television that’s fading in and out), well it was frightening and difficult to process. I really just wanted an exact science, step 1, step 2 and so forth for getting better. Of course it was not that simple. It was more like ‘first we will try this and then after a month we will test again’. There were pathologies and endocrinologies, saliva tests, red cell, white cell and platelet morphologies, serum biochemistry….. lots of ranges for which my results did not fit, I was under-done on everything it seemed.
Fast forward to today…. (5 years back in the corporate world 4 days a week, constant awareness of fatigue levels, ongoing maintenance and ongoing worry aside…) and now the latest research is out and seems to be quite a big deal with regards to ‘why’; not so much the initial causes but how those causes manifest as issues in the body. Although digesting the medical speak is no easier than it ever was!
I still don’t understand it all by any means but apparently a study of 84 men and women with CFS/ME in the United States has found that the cells of people with CFS/ME are in a state of protective hibernation as a response to environmental stress. ‘The study by Robert Naviaux from the University of California, San Diego, discovered that patients with CFS/ME had abnormalities in 20 metabolic pathways. In response to infection or other stressors, the cells go into protective hibernation, which limits the consumption of resources so they can engage in a hypometabolic state. The degree of hibernation is directly related to illness severity’ (thanks to Emerge Australia for summarising the medical findings into almost human speak).
Basically, the metabolic characteristics of CFS/ME have been determined, and it’s been found that we have a characteristic chemical signature and an underlying biology quite different from people without CFS/ME. Meaning we are uniquely different!
Well, we kind of knew that right, but now that this difference can be pin-pointed from a medical standpoint, there is a much better chance of developing treatments that work (and work better and faster). The biochemical pathway disturbances that are referred to in the study results sound awfully familiar to some of the talk my specialist used 12 years ago. ‘Abnormal metabolites…. widespread decrease in plasma sphingo- and glycosphingolipids…. acute cell danger response (CDR)…. decrease in plasma purines in CFS is consistent with decreased synthesis and/or turnover (flux) of ATP and GTP and decreased reserve capacity caused in part by a generalized decrease in the ability to restore high-energy phosphate stores after exertion… HICA was decreased in both males and females with CFS…. this is consistent with decreased gut absorption, increased renal excretion, increased mitochondrial oxidation, or a combination of the three’…. all sound like the specifics of this debilitating illness are finally showing themselves.
Certainly sounds like it will make a diagnosis easier and quicker to obtain. And I would imagine that it will also help to cement CFS/ME as a ‘real’ illness, after all, difficulties in diagnosis have surely contributed to a lack of being taken seriously in many quarters.
Furthermore, it also sounds like there is now a means by which to quantify the severity of the illness (not simply based on the degree of not being able to do normal every day stuff that the patient is reporting, or the number of hours they can get up out of bed for in any given day…).
‘Sphingolipids, glycosphingolipids, phospholipids, purines, microbiome aromatic amino acid and branch chain amino acid metabolites, FAD, and lathosterol were decreased. The decreases in these metabolites correlated with disease severity as measured by Karnofsky scores…’
Here’s the significance of the findings, as per PNSA (Proceedings of the National Academy of Sciences of the United States of America):
Chronic fatigue syndrome is a multisystem disease that causes long-term pain and disability. It is difficult to diagnose because of its protean symptoms and the lack of a diagnostic laboratory test. We report that targeted, broad-spectrum metabolomics of plasma not only revealed a characteristic chemical signature but also revealed an unexpected underlying biology. Metabolomics showed that chronic fatigue syndrome is a highly concerted hypometabolic response to environmental stress that traces to mitochondria and was similar to the classically studied developmental state of dauer. This discovery opens a fresh path for the rational development of new therapeutics and identifies metabolomics as a powerful tool to identify the chemical differences that contribute to health and disease.
So what next? More clinical trials I would imagine, boosted by the fact that there is now a better understanding of what patients are actually presenting with. There’s a place to start, to compare, and to formulate better treatment plans from. It’s been a long road hasn’t it, all the way back to the 1980s and so called ‘yuppy flu’ (and who knows how long before that).
But we have a voice now (unfortunately mostly down to the growing numbers… 2 million people in the United States alone, approximately 150,000 here in Australia).
Now we just need society and governments to catch-up with regards to finding ways to alleviate the ‘additional pain’ of CFS/ME on those who are suffering. By ‘additional pain’ I mean the fallout; loss of work, loss of income, lack of assistance from Health and Welfare organisations, lack of support, legal advice, lack of options…
For me, the additional pain remains to an extent, as a reminder (whether I like it or not). I know how to curb the physical pain these days more or less (magnesium, massage, foam roller, sleep, a healthy lifestyle, and lots of arnica cream!) but my life now directly reflects what occurred when I couldn’t work for 3 years and could only work part-time for another 2 years. I am playing catch-up. I feel vulnerable. I started again from scratch financially (in fact worse than scratch because I had loans and credit cards to get me through the bed ridden months and the uncertain years beyond that)… I was in a country where I was not entitled to any benefits or financial support, I had no credit history, and I had only been in the workforce in Australia for about 2 years. I had no family here either.
I’ve been back in a well-paid job for 5 years now, contributing (excessively lol!) to this country via tax…. still not entitled to anything after 14 years of residency (only if I become a citizen am I taken seriously apparently, and entitled to government pension etc). So the future is still a little wobbly.
I berate myself sometimes for not being where I ought to be for my age, but really, once you have experienced the feeling and the fear of your body stopping in its tracks, nothing really matters the same. It’s a memory that doesn’t go away, it impacts pretty much every day in some way or another, whether it be a thought that takes you back to those times or a feeling of tiredness that scares you. The things that become important when you are post CFS – to whatever degree of recovery you have been able to achieve – are about day to day, about maintaining, about smiling, about surviving, and about thanking your lucky stars that you are able to participate again in life, even though that is likely to be to a lesser extent than before CFS came along.
This year I am going to spare a thought for those who are still sidelined from life, battling through the dark days of fatigue and debilitation…. combined almost certainly with family and financial challenges, misunderstanding, anxiety and fear. I am going to attend the global day of protest and action that sends a message to governments all over the world to give greater recognition, research and funding to CFS/ME…. the missing millions (#millionsmissing).
In May this year, the first global day of protest was held. Hundreds of shoes were placed on the lawn in front of the State Library to represent the millions of people with CFS/ME who are missing from careers, schools, social lives and families due to the debilitating symptoms of this illness. And this happened around the world.
If you wish to join or support the forthcoming day of protest here in Melbourne, then it will be held on the steps of Parliament House on October 12th at 1pm.
Many thanks go out to the CFS/ME societies across Australia for providing information, support and a voice.
To read the entire article on the latest research visit:
To visit Emerge Australia (the Australian-wide organisation for news, info, support and research for CFS/ME), click here:
To see what Millions Missing is all about:
To connect with the Millions Missing protest in Melbourne: