This is a subject that I have been pondering quite a bit over the past few weeks due to being both a M.E patient (14 years, this 23rd November) and ‘Long Hauler’ (since 23rd March). Having both illnesses has given me a wide view of chronic illness patients’ expectations and diagnostic ‘journey’.
When I initially got sick with M.E back in 2006, I was the only person at that specific moment in time who was experiencing the exact same thing after being ‘triggered’ by Labyrinthitis. When I attended GP appointments, they were dealing with the symptoms presenting themselves rather than the latest research published from the BMJ or outcomes of a researcher/scientist /medical professional Zoom meeting. It took about two and a half years to get my label of Chronic Fatigue Syndrome (I now self-identify as an M.E patient as I meet various M.E criteria – criteria that my GP didn’t assess me with). I was given that diagnosis and sent on my way.
In 2006, Facebook was for ‘pokes’ rather than community groups, Twitter hadn’t been invented and, although online forums existed, I wasn’t a regular user of the internet. My illness had been so downplayed by the locum GP who gave me my label that I had no idea that support groups or charities existed. His encouragement to take my dog for a walk more often and ‘keep going’ stuck with me and I tried to stay as ‘normal’ as possible. I was studying for a postgraduate degree and holding down three part-time jobs whilst feeling incredibly unwell with no tangible support. About 3 years after my bout of Labyrinthitis, I was offered Chronic Fatigue Syndrome ‘support’. It consisted of Cognitive Behavioural Therapy and advice on pacing. The pacing advice was invaluable and has helped me to this day, but the CBT didn’t work for me.
M.E is a very individualistic illness. Individual patients experience their own particular form of M.E in terms of symptoms, fluctuations, and severity. We are also solo travellers pre-diagnosis. We are on our own, or at least on our own until we discover our awesome online community. We have faced stigma and disbelief from the general public and medical professionals for decades and find solidarity with other patients from around the world. Irrespective of the language we speak, our lived experience of M.E is the same.
I didn’t join our online M.E community until 2014 when I launched ME Foggy Dog, I had no idea there were hundreds of thousands of M.E patients hanging out on Twitter and Facebook. I found many new ‘friends I’ll never meet’. I’ve since ‘met’ so many patients who had been dealing with this disease for decades longer than I have but who show immense resilience and strength of spirit, those people have my utmost admiration – I find them inspirational – love always.
The second I heard ‘pandemic’ and ‘it’s not flu’ back in January, as was the case with other advocates and charities, I started to actively promote convalescence and rest on a daily basis on social media and in every single platform I could think of, including the Star and Crescent. This advice was visible and there for anyone, including those who hadn’t caught Covid19 yet, to see. This was advice I wasn’t given 13 years prior and I am sure this is what set me on the chronic illness ‘dual carriageway’ that I now find myself on. If anything positive is to come from this pandemic it is that thanks to the M.E online patient community, thousands of Covid19 patients will not develop a chronic illness because of our advice to rest and convalesce. Old school convalescence is not medically trendy in 2020 and medics will not have given Covid19 patients that advice at the start of the year. Some are still continuing to ignore NICE guidance and are recommending an increase in activity to ‘recover’. I think our community deserves to be self-congratulatory, we are all incredibly unwell ourselves but are working hard to make sure others (who were previously fit and healthy) don’t get to experience the same stigma, neglect, disbelief, and fate as the 17-30 million M.E patient global community.
I was actively using social media to educate about how Covid-19 affects M.E from the outset (see links at the bottom of this blog), I wrote blogs, posted on social media, and posted videos of myself to show how breathless I was. I felt this would be useful for the M.E community. Initially, I had no idea that Covid19 would spawn a new global online community of ‘Long Haulers’ so quickly. Literally, the second these patients weren’t ‘well’ by the 14-day point they were looking for support online. This simply didn’t happen back in 2006.
Long Labyrinthitis groups do not exist.
I do wonder if the creators of these online support groups have reduced their chances of ‘recovery’ by working through their sickness. As a chronically sick patient who runs an advocacy platform, I know the amount of energy and stress management required to fight for a cause, to give a voice to patients, and raise awareness of the disease they suffer from. The difference is that, during the early stage of my chronic illness, I was able to concentrate my own health and needs. I became an advocate 7 years into my chronic illness ‘journey’.
I initially joined a Long Covid online support group but found that I was having to advocate for rest and convalescence instead of getting the support I needed personally. I also muted the hashtags #LongCovid and #LongHauler as I found many of the threads triggering. I am very grateful to Jenny Sherman for creating this PwME Covid19 support group, The support and information sharing is appropriate for people with pre-existing chronic illnesses. The language used by chronic illness veterans is completely different to that used by people new to the world of chronic illness. Over time, a few newly diagnosed Post-Covid19 M.E/C.F.S patients are joining, it’s not good to see but thank goodness they have an appropriate support group to turn to.
Many Long Covid patients who experienced their acute infection at the start of lockdown will have benefited from not having the added pressure of having to go to work. I know illness doesn’t take away financial worries or family commitments, but the physical act of going to work wouldn’t have been there for many. More recent Long Covid’s will have felt the immense pressure to return to work as their employer tried to ‘get back to normal’. I wonder how many future Long Covid’s will be unable to rest and convalesce. I strongly believe that there will be more Long Covid’s as a result of the ‘second wave’ than there were during the first, because we aren’t in ‘full lockdown’ now and, because Long Covid doesn’t show up in standard tests, employers may not understand the need to be off sick. This has historically been the experience of M.E patients. These patients have had to unsuccessfully attempt to ‘push through’ because their invisible chronic illness is not easily diagnosed, recognised, or understood.
I’ve said before that I believe Long Covid’s experience information overload when compared with early stage, newly diagnosed M.E patients. Where information was hard to come by back in 2006-2009, Long Covid’s are seeing minute-by-minute updates, participating in research zoom calls, watching Zoom conferences, and are signing up to research studies. I can understand the need for all of this but they don’t yet know if any of what they are reading or seeing has any relevance to their particular brand of Long Covid. I’ve noticed a number of Long Covid research studies that require participants to increase their activity. I have flagged my concerns with the relevant research teams but do wonder if Long Covid patients who are desperate to ‘be fixed’ will participate in anything despite our message re. rest is best. I understand this sense of desperation, I have experienced it myself, but I believe it is far too soon to know which subset of Long Covid each patient sits in and the risk is still too great.
I don’t remember demanding treatment or support in the early stages of my chronic illness journey. I remember pleading for help from my GP but I took what was available, which in my/our case was not much. Long Covid19 language is different but I think that’s because it is linked to a pandemic. I regularly wonder how Long Covid patients would be reacting if they hadn’t become chronically sick as a result of a global health crisis. If they, like us, had been ‘triggered’ by something else they would have to wait at least a year to get an idea of what they were dealing with. As we know, around 9000 people develop M.E in any given year. I wonder if patients who have been ‘triggered’ by Labyrinthitis (or any other trigger) this year will be ‘fast-tracked’ in the same way that Long Covid M.E/C.F.S (as is the label being given) patients are?
I’ve called it a ‘dual carriageway’ as I now have M.E and Long Covid but in reality, it is more like a dual carriageway with a B road shooting off it. The B road is Hypermobility Syndrome. 6 months after my acute Covid19 infection, my rib pain is excruciating. I have asked a number of Long Covid patients both with M.E and without and I am still none the wiser about whether it is a Covid19 symptom or a flare of my pre-existing Hypermobility Syndrome. This has lead to a lot of internet searches and messaging of Hypermobility Syndrome charities for advice. MY HS had lessened significantly over the past 2 decades and this flare of pain in a completely new area is not welcome! I am 95% confident that it is NOT Costochondritis as that affects the ribs around the Sternum. My pain is in the lower 3/4 ribs around my entire chest – front, back, sides. Breathing HURTS. If anyone can shed any light on this I would be very grateful. A 111 GP has already confused my rib pain with lung pain and, very sarcastically told me that ‘you can’t feel your lungs through your ribs’ after I said it hurts when I touch it. My GP is currently concentrating on my organs and damage inflicted by Covid19, it will be a while before my rib pain can be investigated/treated.
The one thing I am jealous of with regards to other ‘previously fit and healthy’ Long Covid patients is that they have no pre-existing condition flares to contend with. Every new symptom is, without shadow of a doubt, due to complications post-Covid19. I have no idea if many of mine are additional M.E symptoms, exacerbation of an existing M.E symptom, or complication related to my H.S. I also have no idea how my M.E/H.S will be affected over the much longer term. As my GP keeps telling me ‘it’s a new illness, we don’t know what we are dealing with’.
My mental health is taking a hammering and I would like to thank Foggy’s Followers for their love and support. It’s definitely helped me get through the past 6 months. I have days when I have to screw my smile on or need to take digital detox weekends when the online negativity gets too much but I’m hanging in there.
Keep up the ‘rest is best’ messaging – even more Long Covid’s need our support now the second wave is growing day by day. New Long Covid patients won’t have engaged with our ‘rest is best’ threads since February.
Love and Foggy snogs,
ps. Here are a couple of links to stuff I posted during the first few months of Covid19. Refresher.
Day 10 – https://www.instagram.com/p/B-blHIcjl95/?utm_source=ig_web_copy_link