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  • Writer's pictureRebecca Logan

When is diagnosis, treatment & research of Long Covid in the UK going to catch up?!

On 22 March 2022, I presented at the Westminster Health Forum on #LongCovid. This is what I said......


I’m a 41 year old wife, mum of 2 girls aged 12 & 15, nurse & fitness instructor. Pre Covid, I never stopped. I worked 12-18 hours each week as a bank nurse in my local Emergency Department & taught 12-14 high intensity fitness classes a week including running my own fitness business. I loved my life..I was the happiest & fittest I’d ever been, doing 2 jobs that I loved as well as having the flexibility to spend time with my family.


Now I’m grieving for that life…on 7 April 2020 I tested positive for Covid 19 & almost 2 years on, have Long Covid. I’m 60% bedbound & housebound unless I am taken out. I use a stick & wheelchair to mobilise & doing simple tasks such as washing my hair can result in severe fatigue & pain.

Everyday is a struggle…I waken each day feeling like I have the worst hangover. I suffer from crippling & debilitating fatigue, migrainous headaches, brain fog, muscle & joint pain, muscle tremors, breathlessness due to fatigue, constant ringing in my ears & post exertional malaise (PEM). Other symptoms come & go randomly but these are the main ones that I have lived with daily & are so debilitating that I have been unable to return to work, be the mum, wife or friend I once was.



I contracted Covid whilst working in Covid ED with inappropriate PPE. My initial Covid infection was moderate & didn’t require hospital admission. I did have to attend ED on 2 occasions due to an increase in breathlessness in the 5 weeks post infection. As with other illnesses I’d had in the past I ‘pushed through’, thinking that this would aid my recovery.

At this stage, Long Covid wasn’t a known illness. By September 2020 I felt I was about 70% recovered, so began exercising because I wanted to get the old me back. After 4 weeks I started to crash…I suffered from extremely high HR, my lips were turning blue & I was having to stop during a class because I was so exhausted. I cut my exercise down & contacted my GP. Unfortunately, after explaining my symptoms I was told I was most likely depressed & advised to take anti-depressants & get on with my life. I was devastated & felt like I was going mad. I didn’t know anyone else who’d had Covid & was like me.


At the start of October 2020 I had seen a local news report about a program that NICHS were running for people who hadn’t recovered from Covid. The first conversation I had with them was amazing-it was the first time that I felt validated & listened too. I cried afterwards because I was so relieved to hear that there were others like me & I wasn’t imagining how I was feeling.


I started the 6 week program in November 2020 & it was a lifeline. Despite it being online I connected with 14 others who were feeling exactly like me. It was a safe place to share with each other in what had been a very lonely journey.


My health continued to worsen & I had to stop exercising however I asked the charity if I could keep the group going independent of them as I felt that we all benefited so much from the group. 12 of us continued to meet weekly for about 5 months & during this time I began to speak out on local & national media about the struggles of living with Long Covid & the lack of support & services in NI…unintentionally, I became an advocate for LC sufferers in NI, which has taken a toll, at times, on my own health. I have met with MLAs & members of the HSCB asking that services for Long Covid sufferers be implemented urgently...I started asking about this in September 2020.


After a local BBC report that I participated in on Long Covid, Katrina Delargey, CEO of TIYGA NI contacted me to offer her help with regards recording symptoms of Long Covid. Together we adapted an app to record symptoms that I gathered from LC sufferers with the hope that in the future it could be used to show health professionals individual symptom patterns & also to gather data on Long Covid. Katrina’s willingness to listen to us as patients & to include Long Covid in her area of work has been greatly appreciated by all involved.


As a health professional I am fully aware of the pressures the health service is under however I am disappointed that the Long Covid service in NI was only allocated £1 million & only began taking referrals in November 21. I was referred on the 12 November & am only being seen(virtually) this week for an initial assessment. This limited funding ends at the end of March & with no executive in place in NI, I’m unsure where that leaves Long Covid services here. It’s shocking that a charity solely funded by public donations has led the way with providing services from July 2020!


Following a media interview with Dr Beate Jaeger in October 2021, I was invited by her to attend her clinic in Mulheim, Germany for groundbreaking treatment that had been trialled on Long Covid patients. Pretorius/Kell/Jaeger et al did a study identifying that microclots & significant platelet dysfunction was present in each of the Long Covid study patients. They used a fluorescent microscope to diagnose. The treatment involved HELP apheresis (Heparin-induced Extracorporal Lipoprotein/fibrinogen Precipitation) & anti platelet & anti coagulation medication. I accepted Dr Jaeger’s invitation because I was desperate to actively seek help & treatment because nothing was being offered in NI or the UK. My baseline prior to treatment was poor.

I was in Germany for 5 weeks; in that time I had 7 apheresis treatments & was on the triple stack medication. I had a mass cell activation & the most awful urticaria during the treatment resulting in me feeling very unwell for the duration of my stay. I didn’t feel any significant improvement however you could visibly see microclots/debris in the filter that shouldn’t be in my blood, so I know this has been removed. Towards the end of my stay I had my bloods tested using the fluorescent microscope & it showed that I had extremely hyperactive platelets..in fact Dr Jaeger said she hadn’t seen any quite like mine apart from Dr Asad Khan’s! (See slides below)

When she told me this I was completely overwhelmed with emotion…it was a strange sense of relief to finally know that there was definitely something pathophysiologically wrong with me that needed appropriate treatment & intervention, not just time, positive thinking & rehab which is what I, along with many in UK have been told repeatedly.



Travelling to Germany took a toll on me & my family, physically, mentally & financially…surely in 2022, we shouldn’t have to travel to another country to have diagnostic tests, validation & treatment? I’m not alone in going to other countries for tests & treatment. There were & are many people from the UK in Germany & I know others who are travelling to South Africa for the same…using life savings, borrowing money from family, because they are getting nothing in the UK & are getting worse 2 years on. We also can’t stay in a different country indefinitely while we wait for the UK to catch up!

There is research around Long Covid in the UK but is not targeting the pathophysiological cause of Long Covid like the studies carried out in Germany & South Africa.


Long Covid is the aftermath of the pandemic.


If we have to learn to live with Covid, then we need services that are face to face, to help those suffering to get appropriate diagnostic testing, treatment & support. Currently the treatment offered is inappropriate in most cases, is remote, limited in scope & doesn’t deal with the pathophysiological cause of the condition. Pulmonary rehab, condition management & CBT are NOT an effective treatment for the symptoms that most report.


Instead I would like to see testing for underlying conditions caused by Covid such as Postural Orthostatic Tachycardia Syndrome(POTS), Post Exertional Malaise, microclots & platelet activity, low venous oxygen level, viral persistence, MCAS to name a few. And for treatment to be based on current research on Long Covid such as HELP apheresis & anti coagulation therapy as per Jaeger/Pretorius/Kell et al. Patient lived experience, especially health professionals living with Long Covid, must be considered & listened to in developing services that are appropriate rather than be silenced & dismissed.


Validation is so important & to have a health professional/team to listen, believe & have some sort of treatment pathway would be a start. During my first consultation with Dr Jaeger, she listened & believed everything I said with regards to my condition & had a treatment plan to offer me without hesitation. The reassurance & comfort it gave me was priceless…I have yet to experience this in the UK with regards to Long Covid.









Financial & employment support for long term absences &/or job losses needs to be addressed. Health care workers in England & Wales are being threatened with termination of employment despite contracting Covid in their line of work. Surely Long Covid needs to be recognised as an Occupational Disease?


Learning from the ME community would be beneficial-the similarities can’t be ignored. Surely working closely together will help both conditions? For example, they have reached out to many with Long Covid & advised against exercise therapy due to the many who suffer from PEM.


Living with Long Covid is a daily rollercoaster of symptoms & emotions. It not only affects the individual, but our family. There have been a few times over the last 23 months when I have told my husband that if it wasn’t for him & my girls, I wouldn’t want to continue living like this.


Long Covid has given me a voice & I will continue to use opportunities such as this to raise awareness, educate & advocate for sufferers like me.


After speaking out in the media I have connected with many LC sufferers in UK. It’s heart breaking to hear our stories. We are all desperate to get our old lives back…it feels like they are on hold-but for how long? We are young, working aged people who are shells of our former selves…unable to work & uncertain of what our future holds. We need support & guidance, medically, financially & with regards employment. It is exhausting researching ways to help ourselves & be continually dismissed.


Long Covid can no longer be ignored…it is a mass disabling condition with numbers increasing daily….how many more lives are going to be devastated before something is done in the UK to recognise the severity of this hellish illness?




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