Warning: contains GIFs
Each week, I am publishing a part in a series about ME/CFS. This is Part V, in which I discuss current research into ME/CFS, and conclude the series. You can find links to the other posts in the series at the bottom of this post. Thanks for reading!
Last week, I discussed the negative attitudes held towards ME/CFS by many healthcare professionals, and the implications of the name “chronic fatigue syndrome.” This week, I’m wrapping it up with research and suggestions for the newly diagnosed. Thanks for sticking with me, folks!
Edit: I have updated this section as of 28/01/19 to better reflect current ME/CFS research (changes were relatively minor).
As you will have learned by now, this disease, though debilitating, is not one that is well-respected by the medical profession, and consequently has very little research funding. While there is exciting potential to ME/CFS research, the studies being conducted now are largely in the preliminary stages. Without the support of more research funding and large-scale institutional backing, progress towards aetiology and treatment will remain agonisingly slow.
While there are very clever ME/CFS patients and advocates keeping abreast of the most recent research (Phoenix Rising and Health Rising being two such resources), I find it too disheartening to see dead end after dead end, too many failed hopes; and as such, I am not as knowledgable about current research. Consequently, this section is relatively short.
As for what research is being conducted: the Griffith University National Centre for Neuroimmunology and Emerging Diseases is conducting groundbreaking research into the biological markers of this illness, and are close to developing a screening tool – though that is a long way off a cure. They have found genetic changes in receptors associated with immunological and cellular function, which gives some indication the illness may be an autoimmune disease. Their research was bolstered with a generous $2.2m donation in 2018. Other research is revealing biological and metabolic alterations in those who suffer from the illness.
When I originally wrote this guide, there was a phase 3 clinical trial under way in Norway, studying the effects of chemotherapy drug Rituximab on mild-moderate ME/CFS patients. Initial trials were very encouraging, with 64% of patients responding positively to treatment, including several who seem to have made a full recovery. However, this was merely an open-label trial (ie, not blinded) to determine dosage, with a very small sample size. Much to my dismay, this trial failed. We will know more when the research is published, but the null result of what remains the only phase 3 clinical trial ever for ME/CFS treatment was utterly crushing for the ME/CFS community. (Please don’t comment that a null result is still a result unless you suffer from a debilitating disease with literally no phase 3 trials published on its treatment.)
As mentioned above, Whitney Dafoe’s father works with the Open Medicine Foundation, to find a diagnosis, treatment and a cure for CFS. He has raised over $2 million in donations, and launched the Stanford Chronic Fatigue Syndrome Research Center with some of the biggest names in biomedical research in the hopes of helping his son and others like him. Their first study will conduct a comprehensive analysis of the blood, saliva, sweat, urine and faeces of patients, including those who are house- and bed-bound, to determine a potential diagnostic biomarker. Initial research has suggested the presence of common metabolomic response in ME/CFS patients.
Dr Ian Lipkin, of the Columbia Centre for Infection and Immunity, is studying immune molecules and the human microbiome to determine how the immune system of those with ME/CFS respond to bacteria, fungi, viruses and toxins. In collaboration with Dr Mady Hornig, he founded The Microbe Discovery Project to investigate these areas. Their groundbreaking research has already uncovered immune biomarkers, unequivocally proving a biological basis for ME/CFS. Drs Hornig and Lipkin suggest that after an initial infection, a sufferer’s immune system is unable to repair itself, and operates in a dysfunctional state of hyperactivity. Unfortunately, their current research only received funding for one year, rather than the five years requested, and the doctors were reduced to filming themselves eating chillies in an attempt to raise funds. This research seems have stalled due to ongoing litigation.
There was some hype a few years back about XMRV: it was thought the retrovirus could be the cause of ME/CFS. Unfortunately, these results were not replicated, and the original study retracted. (In fact, Dr Lipkin conducted a study which definitively ruled out XMRV, and a another retrovirus once implicated in ME/CFS.) There are still some researchers interested in viral causes of this illness – Dr John Chia, an infectious disease specialist, believes enteroviral infections play a role in ME/CFS. His research has found that ME/CFS patients are significantly more likely to test positive for enteroviral infections in both the stomach and gut, compared to healthy controls.
Brian Vastag, a former science reporter with the Washington Post, wrote an open letter to the National Institutes of Health director Francis Collins, begging him for more research funding. He spoke for all patients when he wrote:
“I’ve been felled by the most forlorn of orphan illnesses…I don’t enjoy being a drain on society, and neither do any of the other ME patients I know. And with the ever-growing research interest in ME, I have hope that someday I’ll be able to stand for more than a few minutes, walk for more than a block or two, maybe even resume my career. (It took me four days, with frequent breaks, to write this letter — that’s a bit slow for newspaper work.)
The causes of ME will eventually be discovered, treatments will be found and patients will enjoy long-term remissions. As the leader of our nation’s medical research enterprise, you have a decision to make: Do you want the NIH to be part of these solutions, or will the nation’s medical research agency continue to be part of the problem?”
That is a question all research institutes must answer.
Hope, help & suggestions
If you are struggling with a ME/CFS diagnosis, there is help available. I have listed several organisations in my resources section – mostly Australian-based. But there are many ME associations and patient advocacy groups around the world who are willing to assist sufferers in any way possible. Emerge Victoria in particular was incredibly helpful when I was in hospital – their director (now gone) rang mum every day to check up on us, and tried in vain to educate the ward about my illness. (I believe they are less active in patient advocacy after a change of leadership).
Again in Victoria, Maurice Blackburn has restated their commitment to offering legal aid to those with a disability. Please contact them if you feel you have been discriminated against due to having ME/CFS, in the workplace, study, or *shudders* at Centrelink.
There is very little government-funded aid available for sufferers in Australia. I was only able to secure a council cleaner due to my mother’s disability, not my own (and that was not an easy task). I have been advised that as ME/CFS sufferers are classified as having a “medical condition,” rather than a disability, we are ineligible for any support from Disability Support Services and other organisations, who may have otherwise provided carers and financial support (this information came from DSS themselves, but as they are a government body, it could be hopelessly incorrect). I hope the introduction of the National Disability Insurance Scheme (NDIS) changes this. [EDIT 28/01/19: Lol, I was wrong. The NDIS is a clusterfuck.]
For those reading who do not have ME/CFS, you will (hopefully) be more aware of the suffering of those who do. There are so many suggestions I could make for how to deal with your friends with ME/CFS, that it should be a topic for another post! (Others have already written great posts on this topic.)
For now, I will say, support your friends with ME/CFS, and indeed any chronic illness. Don’t assume you can understand their suffering, or compare it to the general fatigue that an able-bodied person experiences. Those with long-term illnesses will tell you that, eventually, most of their friends desert them, so by sticking around you are doing more than most.
Don’t tell your disabled friend how to feel, how well they look, or otherwise suggest that their illness is less than it is. In other words, don’t deny your friend’s lived experiences. Acknowledge their pain and ride it with them. Reject society’s ableist assumptions, and give a fuck about the disabled people in your life.
Like I said at the beginning of this series, I am no expert, merely someone who has lived with ME/CFS for all of my adult life. It has been my constant companion, shaping every aspect of my life, from the moment I wake in the morning to when I shut my eyes at night. I have no idea of what it means to live as a healthy adult, any more than an able-bodied person could truly understand my life. Through this series, I hope I have brought you closer to the understanding of what ME/CFS is, and how it affects not only myself, but so many other sufferers across the world.
If you’ve enjoyed this series, please consider donating to the vital work done by ME/CFS researchers. Their research is the only way people like myself will ever have a hope of recovery. You can support the National Centre for Neuroimmunology and Emerging Diseases and the Microbe Discovery Project through their websites. And spread the word! It is only ignorance that causes prejudice, and thus discrimination. The more light is shone on this terrible disease, the less likely sufferers will be discriminated against for the “crime” of being unwell.
Bloggers with ME/CFS etc
Mishka of Crafts, Chronic Illness & Adulting writes beautifully about her experiences with various chronic illnesses, including ME/CFS
Toni Bernhard has written several books about chronic illness, and blogs at Turning Straw Into Gold
Hannah of Super Pooped
My beautiful friend Merete blogs from bed at https://kroniskverdifull.wordpress.com/
Sue of Living with ME/CFS writes about her experience with the disease. Her older son also suffers from a mild case.
Emma of Blonde Voyage is undergoing experimental treatment at Breakspear Hospital in the UK
Michelle at Living with Bob writes about her life with dysautonomia, with a healthy dose of disability politics
ChronicBabe is a website for women with chronic illness
Managing Chronic Fatigue Syndrome and Fibromyalgia by Bruce Campbell is a good guide to pacing and self-management.
Living with M.E. is one of my main sources for this series. It is written by a doctor, Charles Shepherd, who also suffers from this illness. It is one of the more balanced books I have read on the topic, and covers everything from symptoms, diagnosis, and management, to working and starting a family with this condition.
The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz, M.A. is the bible for sensory processing disorder. It is aimed at parents who have children with SPD, so is written in third-person with examples of children’s behaviour. However, it is the most comprehensive book I’ve ever read on the topic, and helped me to understand what was going on on in my head. Most of the therapies in the book are unsuitable for those with ME/CFS.
Doing Harm by Maya Dusenbery is the most succinct yet comprehensive overview of the systemic sexism within the medical system I have ever read. Highly recommend.
Sources (general – for specific sources, please click the associated link)
Collatz, A. (2016). A Systematic Review of Drug Therapies for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Clinical Therapeutics, Vol 1, Number 1.
Reynolds, K. (2004). The Economic Impact of Chronic Fatigue Syndrome. Cost Effectiveness and Resource Allocation. Volume 2, No. 4. Available at: http://resource-allocation.biomedcentral.com/articles/10.1186/1478-7547-2-4
Pheby, D (2009). Risk factors for severe ME/CFS. Biology and Medicine, Vol 1, Number 4: 50-74.
Thanks for reading my Dummies’ Guide to ME/CFS! You can find the other posts here:
Part V, Research & Conclusion