It has taken nearly two years for this to flow semi-coherently. I have wanted to scream it into the chaos and let it run free so many times, but it needed a steady hand to guide it to the right ears. The ebb and flow of the Omicron wave and our impending, enforced “freedom”, which is something that ostensibly seems to benefit no one, save a certain PM’s job seems the right time for some joined up thinking.
I have suffered from severe MECFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), caused by the Epstein Barr virus for over 20 years. It has savaged my life, my plans, my dreams, and so it is terrifying to watch from the sidelines as another virus takes control of the world when a virus took so much from me. My feelings are echoed throughout the disabled and chronically ill communities. The least palatable of these feelings is that it is rage-inducing to watch the hysteria and panic people feel when they have the slightest liberties taken from them, experience any isolation for the first time. There are disabled, disenfranchised and ill people worldwide who have watched this pandemic so triggered and hurt because they have suffered in silence and been ignored for decades and now their pain is centre-stage in the world’s media but being borne by other people. We can’t help but feel, for want of a better word, and thank you ‘Workaholics’ for this phrase, “butthurt”. It’s an ugly truth but there it is. It’s human. And our grief of being ignored, of medical gaslighting, of losing friends and family through isolation and having our diseases marginalised for lifetimes feels so much more acute for a lot of us when we see people in the media complain about only having to deal with small aspects of loneliness, tiredness and so on for a few days or weeks rather than years.
I do, of course, feel deep empathy for what is happening. It is charities such as the ME Association that were the first to mobilise and defend the rights of and lend advice to people with what emerged as Long Covid because MECFS doctors and researchers anticipated there would be serious post-viral complications with such a far-reaching virus. They didn’t know the details, but they knew help would be needed due to the fact they were so familiar with MECFS, a disease that as it becomes better understood seems more and more to be linked to a viral trigger. Even now people are turning to these charities daily as their GPs still don’t get the message that post viral complications are real and life changing and so many doctors still subscribe to the damaging biopsychosocial model of treatment. It took decades for MECFS charities to fight for the revision of the NICE guidelines in the UK to omit harmful Graded Exercise Therapy (GET) despite repeated clinical trials and anecdotal evidence showing this “treatment” to be harmful. Yet, because this revision was only finally released after varied legal battles in November 2021, many post viral Long Covid patients had already been recommended GET as helpful to them and it had been MECFS practitioners trying to intervene in writing NHS trust guidelines for Long Covid to make sure GET was not recommended for Long Covid to protect patients’ wellbeing. The problem is that GET is shown to prolong recovery times by exacerbating symptoms and making it harder for the damaged mitochondria function to recover, forcing physical exertion before the body is ready and before you feel ready. This is why the MECFS charities are still such an important port of call for Long Covid sufferers as they are still in the process of collecting their own patient communities.
It is important to establish what these conditions are when we talk about them. Many articles and journalists seem to confuse them and infer Long Covid simply “is” ME. The ME Association recently reiterated this is not the case. They are very different diseases that simply have a possible shared cause of some viral event. MECFS is a long-term illness characterised by severe fatigue, neurological and immune deficits and chronic pain. Post Viral Fatigue Syndrome is different again – you may be knocked for six by Covid for a few weeks due to PVFS, but that is different from needing special scans on your lungs for micro-clots because you have Long Covid. Where all three overlap is in the symptoms of PEM (Post Exertional Malaise); meaning extreme pain and their chronic nature. Every small task becomes newly impossible. In the worst cases it’s washing, talking, breathing, even your body’s interaction with chemicals, substances, sounds and light. For milder but still very life-changing cases it’s walking to the fridge, trying to play with your kids, no longer managing to complete a phone call before becoming confused and (zeitgeist alert) overwhelmed by brain fog.
As an MECFS sufferer, I often need to scroll past articles on Long Covid and file them under “to read when emotionally strong enough”. Reading about the money being poured into funding and clinics and support when little to none has ever been forthcoming for my almost identical disease is gutting. MECFS sufferers are still as marginalised as ever and we wait for scraps from the medical community. We have now passed the milestone of MECFS being put on a death certificate as the cause of death, people have been locked up in psychiatric wards in Denmark in the face of no effective treatment for suffering a very physical disease that now has central stage. The Long Covid research, however, does provide a glimmer of hope, as much is relevant to us and we just have to wait for it to trickle down. This is agonising though. What if it doesn’t get to us? What if a wonder drug is found for Long Covid that could help everyone with MECFS and but never gets approved due to politics? We have been here suffering from this carbon copy disease for decades guys. Hi! waves We don’t want preferential treatment but we know that media volume rules all and so it is anxiety-inducing knowing we might not have the voices needed to get access to the new resources.
Long Covid is very accurately being called the “biggest mass disability event in history” by Wales Online. I don’t think many practitioners are really quite aware yet of what havoc it may cause. The Office of National Statistics (ONS) conservatively estimates that 12 weeks after infection between 3-12% of those infected with Coronavirus still experience some symptoms. This brings me to a secondary issue for when we talk about Covid and the language of this disease. The discourse is flawed. Many people talk about “testing positive” and downplay that for every “positive”, whilst there are asymptomatic cases, 3-12% of all infected people are going to struggle with some prolonged fatigue. This means that some aspects of their daily life are going to be affected for weeks to come. This is something we need to really learn about, learn to care about and adapt our language for when talking about Covid so that we may be ready for welcoming and adapting our lives around the fatigue and disability issues that are to follow. One of the crucial fears with such a “disability event” is well illustrated by Frances Ryan’s horrifically accurate book ‘Crippled’. She perfectly describes how austerity has politically and therefore culturally further “demonised” the disabled and that it means our society is less prepared than ever for so many more people to need state support and community understanding. Stigma, access to benefits and other help is really difficult right now especially with extended waiting lists and unavoidable NHS backlogs.
The only approved treatment not in the testing phase for all these conditions is ‘pacing’. That is to take things carefully and slowly, seeing your energy as a finite resource and learning how to measure it out carefully. Some with MECFS and other chronic conditions know this as “Spoon theory”, the idea being that the energy is being “spooned” out. This careful living is the only advice the NHS has for avoiding PVFS and therefore trying to reduce the chances, if possible, of some Long Covid scenarios: “Maintain a realistic daily routine for sleeping, eating and daily activities to help the body to stabilise itself. Gradually change back to your normal routine, but don’t RUSH. A healthy person can take 2 weeks to adjust to a sleep pattern change, so it may take you longer.” The truth is that even with mild post viral complications, even small tasks need to be relearned, even if it is just temporarily.
It is a harsh truth that I count myself `lucky” as I have family to help with my disease. I have wonderful parents who helped me navigate school and a life half-lived and I somehow managed to marry a magnificent man who took on the challenge of being a carer in his 20s, our private life so markedly different to those around us. Yet how we have lived, hidden, isolated, crippled by my fatigue is what millions more people are now experiencing to varying degrees. It’s overwhelming to think this has happened so rapidly. Anytime a friend contracts Covid, I write the same message preaching rest and care because they are the enemies of PVFS. I also feel deep fear and dread. I don’t want anyone I care about to enter into the same 20 year contract of continual grief and struggle with their body and reality I have. Here is my central conflict. I find it both triggering and upsetting to read about what is going on; I feel left out of the conversation about what is happening regarding possible treatments, but I and all fellow MECFS sufferers also have a lot of experience and empathy to share and we don’t want to feel ignored on that front either. Millions of us know your struggle if you are not finding it easy to “bounce back” from Covid and we can all work together to understand and support you through Post Viral Fatigue Syndrome. We want to do anything we can to all work our way through finding cures to Long Covid too, we just want acknowledgement that we’re here too. We know the true heaviness of trying to do the most banal, everyday task whilst feeling like you’re moving through semi-dry concrete. From reading a simple instruction or listening to your loved ones speak, to trying to get to the bathroom.
There has already been one drug trial that was approved towards the end of 2021 for AXA1125 that could be tremendously exciting for both the Long Covid and MECFS communities. The drug focuses on mitochondria and their job as cell “batteries”as they are crucial in generating energy from our food for adenosine triphosphate or ATP which is what our cells depend on for thriving. Long Covid and MECFS patients are found to have a broken link in this process. ATP also produces a by-product of lactic acid in our muscles and again, patients of both MECFS and Long Covid are found to not be able to purge themselves of this, which in turn causes pain and stiffness. By normalising mitochondrial metabolism, it’s hoped, AXA1125 will alleviate some symptoms of fatigue and pain and make some aspects of life easier. There is huge excitement that if this drug relieves Long Covid fatigue symptoms, that it could help MECFS too, as long as we get access to it.
It is slightly jarring that such a drug came to be so quickly when Long Covid needed it but not when MECFS did. Until now MECFS relied on champion scientists such as Ronald Davis of Stanford to tirelessly fight to advance all research due to lack of significant funding. Davis is famed for his work on the human genome project but then his professional career took a u-turn when his amazingly talented son Whitney Dafoe’s life was completely devastated by MECFS in 2007. Davis started dedicating more and more of his spare time to mapping his son’s genes in his lab. He slowly illuminated things that had never before been examined by MECFS researchers and a different picture emerged, outlined bravely in his book ‘The Puzzle Solver’. Millions suffer from MECFS globally and they are said to have a lower quality of life than people with diseases like HIV/AIDS (Ronald Davis). Despite this, the funding inequality is horrendous. If we look at the USA, The National Institute of Health spent only about $15m in 2019 on ME/CFS research, which affects up to 2.5 million Americans. That same year it spent about $111m on MS research, which affects about 1 million people. Ronald Davis worked to redress this as he put personal prize money towards his MECFS project. He has been an utter trail-blazer and having someone of his notoriety behind the disease’s research has helped its quest for legitimacy and therefore, funding. It is just so tragic that it came at the cost of his son’s and many other peoples’ health. Now that Long Covid is so obviously intrinsically linked to MECFS his research is even more in demand after Dr. Fauci called Long Covid “a significant public health issue” and linked the two diseases publicly in a speech in December 2020.
It is estimated that similarly in the UK, MS receives some 20 times the amount of funding of that of MECFS. Strangely, recent discoveries have now linked MS to the Epstein Barr virus, where people who have had the virus are 32 times more likely to develop MS. Epstein Barr, as it was for me, is also one of the primary viral triggers for MECFS and also something that has been found to be related to Long Covid outcomes too, with scientists at John Hopkins arguing it is possible that the existence of latent EBV can heighten the chances of worsened Long Covid outcomes as the virus is reactivated by Coronavirus. It is recognised that these ideas concerning mitochondria, metabolism and EBV are still mysterious to the scientific community but overlaps are emerging and it is my deepest hope joint committees can exist to share information. Joined-up patient communities already exist with the MECFS community reaching out to Long Covid patients. For now this is the only meagre solace I can find from the pain I feel when I feel utterly left out of the conversation going on around me, when I see talk of Long Covid treatment but none for my own disease or when I fear someone else going through what I go through without advice or support when I feel my experience may benefit them. My enduring thought and will for now though, for anyone is to take Covid seriously, wear a mask, Long Covid happens with mild cases of coronavirus and PVFS also. Both are serious and can be life changing. Take it from me. I live this.
