Read Debbie Abrahams' speech on Long Covid
Yesterday, I took part in a Long Covid debate secured by my colleague Layla Moran MP. It’s important that we recognise that we need a societal not just a healthcare response to Long Covid. Working age people with Long Covid must be provided with support by their employer and the Government through the Department for Work Pensions and not stigmatised.
You can read my speech in full below.
It is perhaps understandable that in the middle of this Covid pandemic the focus has been on primary prevention, managing the acute symptoms of those who become infected and preventing death.
But given that the Covid-tracker survey suggests more than 4 million people (~12% population) have symptoms beyond the 4-week acute phase with 1 in 10 experiencing symptoms beyond 12 weeks, we also need to develop healthcare management responses that recognise Covid can have effects way beyond the acute phase.
On top of this we need to have appropriate societal response to Long Covid, one where people are supported during the chronic and fluctuating stage of this illness, and don’t feel stigmatised.
I’m pleased at the speed with which NICE – the National Institute of Health & Care Excellence – have brought forward their guidelines for managing Long Covid. I particularly liked the recommended holistic healthcare approach when assessing a patient with symptoms beyond 4 and 12 weeks, with the emphasis on empathy and acknowledging the impact the symptoms may be having on the patient’s day to day lives, including their ability to work.
However, I was surprised that there was no reference to immunology or immune therapies.
I hope that we have learnt from the mistakes made in how we prevent, treat and care for people suffering from Chronic Fatigue Syndrome also known as ME, as well as Post Viral Syndrome.
We know that Covid-19 like other viruses, attacks multiple systems – respiratory, cardiovascular, nervous, gastrointestinal – as it attaches to epithelial cells which are distributed throughout the body.
But our bodies ability to fight the virus depends on our immune systems reacting appropriately, and not over-reacting.
The British Society for Immunology and several research units have suggested that it in addition to long term damage to multiple organs, the pain, muscle weakness, fatigue and even brain fog often associated with Long Covid may be due to inflammatory issues associated with our immune response rather than with Covid itself.
There is still so much we don’t know about this virus, and we really need to be investigating this as a matter of urgency. The prevalence of Long Covid in the population strongly points to the need for a Long Covid disease register with effective treatment regimens.
More research is desperately needed to understand the long-term effects of Covid on all body systems including our immune response. As a strong advocate of evidence-based medicine, I recognise the need for longitudinal studies, but it’s also important that we never let the perfect be the enemy of the good: we cannot wait decades for therapies. And we must learn from previous mistakes in relation to CFS.
We have seen how quickly we can develop vaccines in response to Covid-19 when there is the will, and we should be demanding this investment in research now.
Finally, I reiterate, we must make sure that this is a societal response and not just a healthcare response – working age people in particular must be supported by their employers, and the Government, through the DWP, if they are unable to work. Stigmatising those with Long Covid will not be tolerated.
Debbie Abrahams MP
AN ANONYMOUS CASE STUDY
“I assume I had a mild Covid infection last April. I had a temperature and flu-like symptoms. My whole body was stiff and ached, making it difficult to walk. I also felt exhausted, with waves of nausea which woke me up when I was asleep.
Those symptoms lasted a few days and then eased, apart from the joint and muscle pain, loss of muscle strength and tiredness.
I went back to work after 5 days but shortly after I remember being out on a walk by myself one Friday evening, and suddenly feeling very dizzy. I made it back home – just – but for the next few weeks I could barely move – I shuffled. The joint and muscle pain were constant affecting my sleep.
I foolishly carried on working from home – I didn’t want to let people down – but had to knock the volunteering I’d been doing on the head.
Over the summer the symptoms subsided, with the pain and stiffness becoming confined to my left side and now it’s just in my left leg and hip.
I’ve managed my pain as best I can and have tried to do exercises to regain my muscle strength. Some days are worse than others. It does affect your mental health…comparing what I could do a few months ago to what I can do now.”