I presented to the National Institute for Health Research as a patient advisor on the largest long covid trial to date
I shared my experience as a long hauler from the first wave, presented The Hidden Voices of Long Covid Project and what changed my recovery
I was one of fifty-one people on a video call with the NIHR
On the 1st November, I presented to the National Institute for Health Research (NIHR) about my insidious experience of long covid for nineteen and a half months.
There were fifty-one people on the call — esteemed professors such as Professor Danny Altmann, Professor Gleeson and researchers and specialists, alongside their patient representatives.
The NIHR had invited them all to present, as they lead the fifteen plus long covid studies and trials, funded with £19.6 million from the NIHR and The Department of Health.
Why had I been invited to present to the NIHR?
I’m a patient advisor on the STIMULATE-ICP trial: the largest long covid trial to date, of 4500 patients in the UK (to be recruited).
Visit www.stimulate-icp.org to learn more.
Professor and cardiologist Ami Banerjee, who leads the trial, asked me to present alongside him, as the NIHR were keen for patient representatives to attend the call — I felt honoured to help.
Ami was very supportive and empowered me to share my experience in a way that felt comfortable for me.
Throughout the last five months as a patient advisor with the STIMULATE-ICP group, they’ve shown me a high level of sensitivity, support and understanding, which I’ve hugely appreciated.
I’m a ‘somewhat success story’ of two specific drugs that were being discussed to use in the trial
I’m a patient at The Royal Brompton Hospital who are ahead of the curve in treating long covid.
I’m also a ‘somewhat success story’ of the very same drugs that the STIMULATE-ICP group are advocating to use in the trial: colchicine and anti-coagulants (blood thinners).
Colchicine singlehandedly increased my ability to walk and talk and blood thinners dissolved my ‘post-covid blood clot phenomena’.
Am I cured? No.
Were these two medications vital for my recovery? Yes.
Was it an experiment? Yes.
This was the gist of my speech:
These were my presentation notes — I summarised my experience into four succinct points:
Intro
- I’m one of the earliest ‘batch’ of long haulers from March 2020. I experienced severe breathing difficulties at the time, couldn’t get to hospital because I didn’t have a ‘continuous cough or fever’ and I’ve had an inability to walk and talk properly ever since.
- I’m now, (bizarrely) a world famous long covid case at the forefront of treatment and I share the lived experiences of having the illness.
1. Patients shouldn’t be disbelieved when we’re nineteen months into long covid
- When I started to notice that I was getting worse after having covid, long covid wasn’t even known then.
- I was disbelieved for nine months, like many many others, which of course creates considerable trauma on top of having such debilitating symptoms.
- It’s like going into A&E with blood all over you and being told that there’s no blood.
- I was even disbelieved by a top respiratory consultant in London.
Why is this relevant to the STIMULATE-ICP study?
For two reasons:
- The work around stigma and inequalities is crucial to turning our anecdotal stories into data — showing how enormous this problem is and to change the way that long haulers are treated.
- My blood tests and scans were normal, which lead me to my next point…
2. My ‘post-covid blood clot phenomena’ has defied radiology
- My blood tests, CT scan, pulmonary angiogram were all normal.
- I was finally diagnosed with micro clots in my lung, so how can a specialist scan to detect blood clots be normal? This has baffled international radiologists studying my case and has been called post-covid thrombotic phenomena.
- So how were the clots discovered? By a nuclear medicine scan called a VQ scan, which is very expensive on the NHS.
Why is this relevant to the STIMULATE-ICP study?
- Because we’re seeing growing evidence of thrombotic phenomena in long haulers and unfortunately many won’t ever undergo the extensive tests that I had, because like mine, all of their tests are normal.
- I’m very happy to report that anti-coagulants dissolved the blood clots in my lung. However, I still have abnormal blood flow there.
3. Listening to patients lived experiences are crucial in learning more about long covid
- Since publicly sharing about my diagnosis, I’ve been contacted by hundreds upon hundreds of long covid sufferers, sharing their experiences with me and the majority had the same inability to walk and talk properly.
- I couldn’t walk or talk but I could write and share. So I collected devastating stories from over two hundred long haulers (with their consent), into a project called The Hidden Voices of Long Covid, which you can see on the screen.
- Dr Ian Frayling on this call submitted his story as well as many other medical professionals suffering from long covid.
- Please bear in mind that I wasn’t hospitalised, just like the vast majority of long haulers in the project weren’t.
- Long haulers are very literally printing out my blog, taking ‘The Hidden Voices Project’ to their specialists and asking them to prescribe them anti-coagulants and colchicine.
Why is this relevant to the STIMULATE-ICP study?
- I’m seeing a growing number of long haulers sharing similar stories with me — they’re now on anti-coagulants from undergoing private testing and finding micro clots and abnormal blood flow. But where does this leave people who can’t access private treatment? It leaves them severely debilitated with no help and they’re told that they’re suffering from ‘anxiety’.
- We must remember how long covid was formed — from us sharing our lived experiences. We need to keep being heard.
4. Colchicine gave me the ability to walk and talk again
- I was diagnosed with a new type of post-covid heart inflammation, diagnosed by a cardiologist who’s experienced in treating long covid patients in our clinic. He trialled me on colchicine.
- A previous cardiologist advised that I had no heart inflammation from my scans and didn’t prescribe me anything.
- I’m very very lucky to be trialled on colchicine, otherwise I would still be unable to walk and barely able to talk, like others.
- To put it into perspective, I’ve spent this entire year being largely housebound and sofa bound — every time I tried to walk or talk much, I’d experience fiery lungs and heart pain which felt like I was having a heart attack. I went to A&E a few times and I was still told that I was suffering from ‘anxiety’.
- I started Colchicine in July and it has single handedly given me my life back. I’ve gone from eighteen months of not being able to walk or talk properly, to now, talking for hours and walking for fifteen minutes every few days
- Long haulers are sending my blog to their doctor, asking them for colchicine and some are finding improvement too.
- Colchicine has vastly increased my window of physical tolerance.
- I have less heart pain when I walk or talk or experience fiery lungs (I want to remind you that these symptoms are prevalent in the community).
- It feels like a fire extinguisher putting out the inflammation — colchicine reduces the symptoms.
Why is this relevant to the STIMULATE-ICP study?
- This is why I feel so strongly about colchicine and anti-coagulants being given the green light for the STIMULATE-ICP study.
Ending
I’m still not fully recovered — there’s a lot of unexplainable issues that my medical team are still trying to understand and resolve.
I’ve been contacting Professor Altmann and Professor Gleeson (who are on this call), to try and get into their studies.
I want to highlight something else because it’s a new area that has no research yet…
I’ve now been diagnosed with ovary inflammation and high grade pre-cancerous cervical cell changes.
This isn’t a coincidence — I had a normal smear test in 2019.
Presenting to the NIHR was a HUGE personal achievement for me
It was quite the challenge to attempt to describe nineteen and a half months of experiencing one of the world’s most baffling illnesses, in two minutes.
Never mind, sharing this torment with fifty-one people on a call.
Anxiety-inducing? You bet.
But this was a challenge that I wanted and needed to rise to, in the hope that my experience could spread more knowledge and to give myself a sense of purpose through this turbulent recovery.
Those on the call listened attentively.
A few months ago, I wouldn’t have been able to give this presentation because reliving the experience from the beginning triggered my PTSD so deeply. It often leaves me sobbing.
A completely normal symptom of PTSD, my therapist tells me.
I was trying to keep focused on succinctly sharing my points, whilst telling myself not to cry. If I allowed myself to ‘feel’ any emotion, my focus was over.
It’s hard to be ‘myself’ these days, whilst dealing with the mental and emotional gymnastics of this illness.
Though, what is ‘being myself’ now, other than caught in an identity crisis between grieving my former life and learning how to live life in a very different body. From the outside, I look completely ‘normal’ — precisely why I feel that I need to explain, with the limited oxygen reserve that I have, to prove how ‘far from normal’ I am.
An issue to explore in another blog post…
Anyway, it was a huge milestone that I conquered and I felt pretty damn proud!
The meeting filled me with an enormous amount of hope
A huge team of researchers on a call for three and a half hours (the majority of whom were reputable specialists), discussing their studies and trials was profound.
I learnt a lot about the other projects.
I felt a sense of solidarity with other sufferers.
And I felt a sense of camaraderie with the group.
The NIHR team emphasised the importance of listening to long covid patients as medical professionals are all learning through what’s happening in our bodies! I cannot tell you how refreshing that was to hear.
I hadn’t had any dealings with the NIHR before this but I felt thoroughly impressed by them.
They mentioned that they’re continuing this format of integrating patients and researchers to facilitate wider learning.
I felt a profound professional humility from such esteemed specialists, much like my medical team and the STIMULATE-ICP study group — they know that we ‘don’t exactly know’ what we’re dealing with but they’re tirelessly working to FIND OUT.
Meanwhile, I’m trying to get into the ‘hidden lung damage study’…
I saw Professor Gleeson on the call and thought, here’s my chance — I messaged him to ask him if I could be part of his hidden lung damage study at Oxford University.
I’d emailed him a few days earlier, sending through my medical letters and practically begging for him to accept me into the study.
Devastatingly, I was rejected last year, because they were only studying hospitalised patients at the time.
To my surprise, Professor Gleeson mentioned me in his presentation to the NIHR — referring to reduced gas transfer in patients such as myself (mine still isn’t improving and we don’t know why!).
Despite being ‘the perfect candidate’ for this study, they’re only accepting long covid patients from three specific clinics at present. Red tape and budgets I guess…I’m gutted.
He mentioned that he would pass my details to his team…
I’m keeping everything crossed.
The advocating never stops.
The ‘fight’ to get in. The ‘searching’ for answers.
It’s exhausting.
But I will never stop trying to fully recover.
And I’ll do anything I can to piece together the answers.
I hope this was helpful reading.
Until the next time…
Jasmine
For regular updates, follow me on Instagram @jasminehayer_
