A year before the Covid 19 pandemic, I was hospitalised, twice, with a severe acute viral infection and associated viral hepatitis; the Epstein Barr Virus (EBV) commonly known to cause Glandular Fever. 4 years later, I remain unable to return to work. Like many battling “post” viral illness, I am desperate to get back on my feet. And moreover, for the science to be funded. My heart goes out to the millions of people worldwide who have been missing from their lives before me. And many more, off the back of Covid 19.
I cannot stress enough how life changing & disabling "post" viral illness can be.
Yesterday, I did an interview (my first live one!) with Times Radio discussing ME/CFS and a new study called DECODE ME. I will end this article with more on DECODE ME and a link to the full interview; I always do my best to end my articles on a positive note.
Back in 2019, following the acute infection, my Infectious Diseases consultant predicted I could fall into a 3-5 year time frame for recovery, with a good chance of returning to 70% of my former self, when I asked her for figures. But she added, with caution, it was not guaranteed - reiterating that it is important not to run away with any 'statistics,' when the science behind 'post' viral illness is so poorly underfunded. Gratefully, I can report that I am experiencing some improvement with my condition, today, despite remaining a shadow of my former self. Some people with an ME/CFS diagnosis are left unable to recover for the rest of their life. Aside from ‘time’ (and perhaps pure luck) I believe a multi-pronged approach to managing my symptoms has plausibly accelerated some of my progress to date; Pacing at home and Hyperbaric Oxygen Therapy at the Midlands Diving Centre, are at the top of my list.
I steer away from giving counsel on how to best treat or manage the condition; I am not a doctor and I am not a scientist. Moreover, the science behind ME/CFS is so atrociously underfunded, there are no answers yet. However, I do hope by sharing some parts of my own journey, I might help someone else in a similar situation (at least) feel less isolated. Here are several approaches currently helping me manage my ongoing symptoms, not a cure, but welcomed support;
- Pacing - see my article
- Hyperbaric Oxygen Therapy - more recently I’ve been 'experimenting' with how to maintain gains by utilising weekly top ups, after several bulk sessions back to back at The Midlands Diving Chamber, Hospital of St Cross
- Putting my legs up & wearing compression stockings. A simple yet effective way to aid my daily functioning.
- Vitamins specific to me, following a hair and saliva test I found online - a few are available out there, nowadays. PLUS the short term use of Vedicinals alongside a predominantly organic diet.
- Short term use of Yasmine with no break - the contraceptive pill to help with the possible affect of hormonal changes. I struggle to find literature on hormones and ME/CFS, but my personal experience is that the fatigue in particular can often be more severe at certain times of the month.
- Pyridostigmine (off label) & Midrodine prescribed by my Cardiologist; finding a consultant who specialises in automatic nervous system dysfunction/dysautonomia has been helpful to date. It was my heart, in particular, early on, I noticed, was not beating as it used to prior to infection.
- As with all of my sharing of what is plausibly helping me to manage some of my symptoms, this will not be appropriate for everyone, but a Cardiologist instructed me to increase my salt uptake to increase circulatory blood volume, lower heart rate and increases blood pressure - see this page on POTS for more information.
- Citalopam for my mental health & associated neuropathic pain.
- Anti inflammatory meds in the form of a suppository, to avoid the stomach pain brought on by the oral pills.
I have read mixed reviews, over the years, as to what helps one person and another. Until science is funded, we cannot know the best approach. But while we wait, what else can we do, but share, with a healthy degree of circumspection, what works for us as individuals, if we happen to find something?
Further complications such as severe viral hepatitis, kidney stones, chronic UTI’s & suspected lymphoma (which led to an emergency neck biopsy, to rule it out) added to the stress on my body during the acute phase of the viral infection. NB - Not everyone with an ME/CFS diagnosis has a severe acute viral infection such as mine; the severity of initial infection does not necessarily dictate the severity of chronic illness to follow. It is however, often a virus which initiates this ongoing disability. And as we are learning, Covid 19 is regrettably no exception.
Over the years, I have had to deal with a multitude of ongoing infections - at least one ‘hiccup’ a month - undoubtedly contributing to hauling me backwards. The last couple of months, however, I have experienced a 'break' from continued infections. My last ‘bout’ was at the end of May/June; kidney infection, kidney stone & a viral skin infection. Here is to hoping that continues.
It is not a case of will-power or strength to 'overcome' ME/CFS, although both are helpful; it truly depends on how the cookie crumbles for the individual affected - environmental, circumstantial, genetics and good old fashioned ‘fate’ are likely contributors to a person's healing, amongst a list of other influences. Robust mental health is crucial, as with any long term illness, but sometimes out of reach given the circumstances. I am fortunate to see any progression, to experience any relief & to be in a position where treatment, such as HBOT, is even an option to experiment with. I will make it my absolute prerogative to continue to lend weight to & support this cause, in line with any of my own improvements.
At the hospital, I had been forewarned, by my infectious diseases team, about ME/CFS - myalgic encephalomyelitis, also known as “chronic fatigue syndrome” which could be 'triggered' by the EBV infection. Severely disabling 'post' viral fatigue was not a complete mystery to the doctors back then, or decades before; nor was it since Covid-19, despite the media “shock factor” of Long Covid. In my opinion, we should (and could) have been way ahead of the game, had those in power, actually listened to the voice of the ME community, years and years preceding.
During the earlier stages of infection, I was told, it looked like a 3-6 month recovery. I had missed all but 1 rehearsal day only for filming due to illness before EBV, so this ‘time frame’ to be sick/off work was unfathomable; little did I know what lay ahead; 12 months later I was further informed that I might enter into the aforementioned 3-5 year time bracket to recover. As much as the improvements to date have brought me a new beacon of hope, I am still unaware of when (or if) I will ever fully return to my old self. And I am still extraordinarily limited.
I used to be very active; open water swimming, running races - I miss exercise terribly, but attempts at the moment cause me severe repercussions. I still have to refrain from walking for more than a few minutes at a time with out significant periods of rest, even within the house, to ensure I stay within my energy envelope. And any journeys are planned with great care. But I recall a time when planning to get to my front door step from the bed, in a one-bedroom flat, was not possible. As brutal as the acute infection and aforementioned complications were at the time, nothing would compare to, or prepare me for ME/CFS. It is not just physical debilitation; the brain fog could at times be equally as excruciating and would find myself mixing up my words in ways I had never done before. This is ME/CFS. And for many right now, this is Long Covid;
Ongoing flu like symptoms, tinnitus, pain, fatigue (not just feeling tired - bedridden, housebound) & sometimes a profound inability to remain upright; even attempting to get out-side in a wheelchair is not an option for some people; dysautonomia can make sitting up and standing, virtually impossible, especially for a significant duration. For me the most disturbing aspect of this illness is something I call PAYBACK - post exertional malaise, PEM, as mentioned earlier on. Even on a “good day” if I over exert, it will cost me.
Since utilising HBOT and being stricter with my multi disciplinary approach, I have thankfully experienced a larger energy envelope and less extreme payback. That is not to say it does not still exist. PEM, post exertional malaise, still haunts so I have to be very careful with the energy I have. And I still often need to lay down intermittently or to take a day in bed. But notably, for me, the HBOT has helped my brain fog, cognitive ability and enables me to have a much better quality of life.
Any therapy/treatment can serve as a catch 22 when you have ME/CFS, because the exertion of getting to and from it can sometimes outweigh the potential benefits, then you’re possible back at square 1 - or the minus squares that come before it.
Also, most treatment is not funded by our NHS and can therefore be extremely costly. It is my personal view that every person struggling with ‘post’ viral illness should at least be allowed to try something non-invasive such as Hyperbaric Oxygen Therapy on the NHS, to see if it could bring them some much needed respite/relief and/or possibly enable a gradual return back to a better quality of life and/or work. Once again, I am not a doctor, or a scientist, this is not advice or a professional opinion; I am just a person who caught a virus and hasn't been able to get better... like millions of others...
I first started HBOT at The Midlands Diving Centre in December 2021. I had 15 sessions back to back, Monday-Friday - viewing the therapy similar to a course of antibiotics (as advised) and succeeding in not missing a session. At first it was tiring and I was unsure; committing to the therapy five days a week, went against my dedication to pacing, which I know to be effective. To facilitate the exertion required, I planned the the trip meticulously. Initially, I stayed as close as I could to Rugby Hospital, at the Draycote Hotel. I ensured my room was on the ground floor and the walk to the entrance/exit was as short as possible. I lay down in the back of a taxi, pre-booked, to get to and from the hospital. And rather than sitting up inside the tank, to accommodate my dysautonomia and with intent to reduce PEM, I lay flat on the floor.
During the first 15 sessions, it was not until somewhere between session 7 and 9 that I felt any sort of significant relief. But when I did, it felt almost too good to be true. Having spoken with others, it varies as to which session a person might start to feel the benefit of the therapy. At the diving centre we go as deep as 14 metres (2.4 ATA) each dive for a duration of 2 hours with air breaks. For me, the specific depth and duration of the session seems to have been important in order to experience the full potential benefits. I did find that the first hour or so after the therapy was my best and I soon lost my zest as the day went on. However, towards the end of the 15 sessions this evened out more. And I felt better than I had felt in all my years of illness.
Unfortunately, not long after returning back home, we believe I caught Covid 19. Although I tested negative at the time, my partner and his family tested positive; I experienced what seemed like one of the worst chest infections I have ever had. I went (and remained) downhill. This was upsetting.
Logically, I eventually returned to The Midlands Diving Centre for more HBOT sessions, knowing that it had provided me with such profound relief, earlier on. And once again, thank goodness, I was taken aback by how effective the therapy was. But... and I hate to type it... as amazing as the initial relief proved to be, frustratingly my health went backwards roughly 2-3 weeks afterwards - a similar timeframe to the last round. I wondered, if the fact I battle at least one infection of some sort per month, bacterial and/or viral, might have hindered my progress. Even during therapy (and after it) I had quite a few infections to fight off - UTI's, throat etc - this is something which has plagued me over the 4 years of being unwell since around the same time of the acute viral infection.
As you can imagine, I was thoroughly disheartened. I had even tried a 'top up' session at a Multiple Sclerosis Centre (closer to home) as a sort of back up plan. At the MS centres HBOT is offered to ME/CFS patients, as well as Multiple Sclerosis. This was my attempt to maintain the gains I had achieved at the Diving Centre. But perhaps I had left it too late? It took a while for the GP referral to the MS centre to process. I also questioned if at the MS Centre, they simply don't dive deep enough? The deepest session at an MS Centre is about 9 metres. Similarly, commercial HBOT offered on the high street, likely won't dive to the depth a diving centre can offer...
Hyperbaric maths (& dosage) was confusing to me initially - to be honest, it still is, especially when some places also seem to work in feet. I now understand that 2.4 ATA is the same as 14 metres, which, at present, is the depth I have found to work best for me personally, in terms of bringing relief. This is not the case for all conditions; some work better at lower doses. More information regarding HBOT dosage can be read here. You will notice, I will be referencing Hayden Dustan's articles frequently.
My understanding, from chatting with Dr Gonevski at The Midlands Diving Centre, is that a significant number of people with Long Covid have had 15-20 sessions of HBOT and don’t usually return for more; a significant number of people with Long Covid maintain their gains and many are back at work and enjoying life. Some people return for further sessions due to re-infection. And others return to see if they can continue to improve. It seems to be that it is not one shoe fits all. I also have heard that some experience the 'relief' later, after the sessions are over. I cannot talk for everyone, only myself. It obviously did something incredible for my own symptoms, because I kept going back.
So where am I at now? Why am I writing about it? And what exactly does HBOT do the body? In regards to the latter, what HBOT does inside the body (and more specifically the "post" viral body) I highly recommend you read this article. In short, gases under pressure act differently, which means, HBOT enables oxygen to get directly into the plasma and the tissues, accelerating healing on a cellular level. So, since returning for a further 15 sessions, I decided to try topping up weekly with HBOT at The Midlands Diving Chamber, where I knew the depth & duration brought relief. This approach was actually suggested by my partner, a serious injury Lawyer who believes ME/CFS has something to do with damage to the brain. I am very glad I listened to him because this, so far, has been my very best approach to managing my condition, alongside the list above. I cannot say for sure if it will be the catalyst to a full recovery, but it is a significant part of the regime which is helping me.
I intend to explore the idea of experimenting further with dosage, both lower and higher. Moving forward, I have the view to get back to trying an MS Centre again for frequent top ups. My plan is to see if the 9 metre dive, perhaps twice a week, could help me to sustain and maintain the gains I have achieved at The Midlands Diving Chamber, diving at 2.4 ATA /14 metres. It's all a bit of a test at the moment, but I am fortunate to at the very least to have found something that can help to improve the quality of my life.
Covid-19 is causing a surge of people - young children, sadly not excluded - to battle long term debilitating symptoms following the initial infection. Roughly, 10-12% of people who get a viral infection are unable to bounce back like the majority. 3 months into my “post” viral fatigue, it turned out I still couldn’t clear the viral load from my blood. Long EBV would’ve perhaps been a more accurate diagnosis? 6 months in, I was eventually diagnosed with EBV viraemia with chronic infection & associated chronic fatigue. And then, at a Chronic Fatigue Clinic, it was confirmed that I had “post” viral ME/CFS. What might my journey have been to date, if I had understood 'pacing' better earlier? And/or had the valuable knowledge of the potential of a multidisciplinary approach, such as my list above and Hyperbaric Oxygen Therapy. I honestly do not know the answer. All I do know is this - We need to FUND THE SCIENCE.
Also mentioned above is a nutraceutical supplementation called Vedicinals-9. I had to make sure none of the ingredients interacted with my current Vitamins before I started taking it. And I was vigilant to check that any prescribed meds I was taking regularly were paused and/or reduced if needed. To be frank, I was skeptical about adding yet another supplement to my large number of Vitamins. But “Pre-clinical and clinical trial outcomes showed noticeable reductions in: fatigue, shortness of breath, hypoxia, sore throat, inflammation, myalgia, heart damage and overall viral clearance time.” And scientifically the ingredients on the bottle made sense to me, so, I thought, fine let's give this a go... I can confidently report back I felt I noticeable benefits and ordered some more. Once again, I fully appreciate that not everyone reacts the same. Around the time I started Vedicinals, I began taking an oral contraceptive pill and changed my diet to predominantly organic.
I cannot stress enough how important it has been for me to take a multi-pronged approach to manage this illness. And there is a reason why pacing is number 1 on the list. But I fully appreciate, that I am in extraordinarily lucky circumstances - pacing might be 'free' to do, but the time and dedication is not; I have a supportive partner and we do not yet have children, so despite the mental aspect of 'pacing' (which is hard to grasp!) I have been able to dedicate my entire time to mastering it. Plus, once again, it's not a cure.
Looking back, there was nothing “post” infectious, in my opinion, about my illness. And possibly still to this day, for a portion of people, “post” viral fatigue is not the correct wording. I couldn’t clear a viral load from my blood for up to a year. And aside from that, viruses can reactivate and persist in tissues, so even without it showing up in a blood-test for some people; we need to be more mindful about what we actually call an illness.
I have lived with virus initiated debilitation for a long time now, but please can we bear in mind that others out there have lived with it for even longer. I couldn’t hang washing. I couldn’t sit on a bench in the park. Eventually, I couldn’t shower. I cut off my hair, to make washing it easier. The day I was discharged from hospital by my infectious diseases doctor, a year after the initial infection, she insisted I waited for a wheelchair to get me to the elevator, which was a short walk down the hall. ME/CFS quite literally knocked me off my feet. How could I be so severely disabled by a virus? And moreover why were top consultants in London, private & NHS, apologising for the lack of treatment/support available?
The question that burns at the forefront of my mind today is - has much changed? Yes, the NICE ME/CFS guidelines were finally updated in 2021 but that is not enough. The incremental increase in exercise is now not to be offered and there is apparently more of a focus on ensuring that people remain within their energy envelope. But who do I then hold accountable for the fact I was prescribed a gradual exercise program, which only made me worse, when I still had the viral load in my blood?
I learnt via the ME/CFS community, in order to do more, I have to do less. And this might be my biggest lesson to date. Less is more. An acting note I was constantly given by my mentor, ironically. I never thought I’d have to apply it so literally to life. I’m in my 4th year of an illness called ME/CFS but you might have guessed, I prefer to reference it as virus initiated disability. And for now, this article can stand as my brief, albeit detailed update regarding my own journey and hopefully ongoing validation for the people suffering.
Now to wrap on a really high note, as promised; I have recently accepted to be the face of a new study called DECODE ME. And in order to facilitate that commitment I will have to pace myself effectively and have had to let go of some other commitments... Bake4MECFS is temporarily on hold, but I do very much intend to come back with another baking challenge soon. And I have plenty of other ideas in the pipeline too! Our ‘half time’ is anyone else’s ‘full time.’ A line I have stolen from Miriam Margoyles book. And trust me, being so limited is a bloody burden not a luxury, so I am trying to be careful with the energy I have.
Sometimes when a healthy person hears that I need an entire day in bed, they have often naively pondered how lucky I am. Now, I am the first person to call myself lucky in a lot of respects, but I can assure you, being disabled by ME/CFS and having to force “rest” in order to function, is by no means relaxing or fun. I was caught off guard to come across a paragraph by Margoyles explaining her wife Helen had a respiratory virus years ago which lead to a Chronic Fatigue Syndrome diagnosis which has never left her. “At one time in the nineties it got so bad she couldn’t walk or stand and I had to feed her.”
On that note I reiterate… Severely disabling 'post' viral fatigue is not ‘new.’ We should (and could) have been way ahead of the game. Moving forward, fearlessly, DECODE ME is aiming to find out the genetic causes as to why some people could be more likely (or less likely!) to get sick with ME/CFS. Looking at DNA (the genome) is essential because this is our chance to reflect biological causes of the illness. GWAS means ‘genome wide association study’ and has been known to provide strong scientific leads in many illnesses; rheumatoid arthritis, type 2 diabetes, asthma.
DECODE ME are recruiting 20,000 - making it the world’s largest genetic study. This is big and promising news for the ME/CFS community and in turn those suffering to date with Long Covid. Such a huge sample should get us longed for robust results. Plus, it will expand to include up to 5,000 people with Long Covid who develop ME/CFS after a Covid 19 infection. Sadly, there is an estimate that there could be over 100,000 people with an ME/CFS diagnosis following Long Covid. I am both proud and excited to be involved.
Check out my first live interview regarding the above, here, with huge thanks to the Times Radio, Action4ME, DECODE ME & EMZFIT youtube.
ReplyForward
Comments