Long Covid patients have been pleading for greater recognition of the condition of GPs, employers and the general public, when describing agonizing symptoms to MPs.
Appearing at the APPG on coronavirus, Dr. Nathalie MacDermot, a clinical physician subspecialized in pediatric infectious diseases, said that while awareness has improved in recent months, “it still hasn’t been great” among the general public.
The 38-year-old woman told lawmakers that she had symptoms of the virus in May, before developing nerve pain and a “slight weakness” in her legs.
In the summer months, she experienced a “significant deterioration” and can now only walk 200 meters without some form of assistance, adding that the condition had affected her bladder and intestines, while experiencing pain in her arms and weakness in the footprints.
“I think we need to be much more aware of primary care so that people are recognized when they first introduce themselves to GPs,” said Ms. MacDermott.
She added: “We need better recognition from employers. I think there are many people who have struggled with employment issues and with the support of their employers, recognizing that this is a genuine condition.
“I think we need a greater recognition from the public, especially from the younger audience that considers itself invincible. I’m 38 and I wonder if I’ll ever be able to walk straight without crutches again. Will this continue to get worse? Will I end up in a wheelchair?
“I think if people thought of Covid not just as a mild illness … people thought of mild or serious and, if you’re old, you’re going to get serious and end up in the hospital and, if you’re young, get over it and you’re going be well. I think they need to realize that there is a middle ground: yes, you may not die, but you may have long-term problems to keep up with. “
Geraint Jones, an advanced HIV pharmacist, said he initially did not feel well over the Easter weekend for working on positive wards for Covid. Despite feeling better after 10 days, he developed severe stomach pains in July and “brain fog”.
He added: “There is very little awareness of long-Covid in communities, in the media, in the public and that was my motivation to really share my story with the professional media.
“I’m a 30-year-old man, I was literally crying on the floor because I didn’t know what to do, who to turn around, too, without support,” he said.
“For me, I would hate to imagine that there are other people out there who are going through or are going to go through something very similar to me. It is just a complex disease, it fluctuates, it changes without any real underlying pathology.
Dr. Linn Jarte, a 33-year-old anesthetist, also told lawmakers that just taking a few steps would make her feel “absolutely horrible” at the beginning of her experience with Covid long.
“I felt like my whole body was full of lead, but at the same time I had this kind of painful burning situation, and it also made my heart rate go up,” she said, adding that she had itchy pains.
Dr. Jarte was affected by the brain fog, describing it as a “thick cloud that just fills the brain”, adding, “I just stopped being able to think.”
Also attending the session, Danny Altmann, professor of immunology at Imperial College London, said his calculations suggested that the UK currently has about 300,000 cases of Covid Long.
He emphasized: “Every time I go on TV or radio, I come across that answer from the devil’s lawyer of ‘well, I’m not an elderly person, I’m not in a nursing home, I need to worry about it, I need a vaccine, do I withdraw socially? I don’t worry too much. ‘
“I think the kind of evidence we have here … means that it’s a real Russian roulette game, because you don’t know if you’re going to be one of the people who will improve in two weeks or one of the people who will be on crutches or a wheelchair for months or years or forever. How many of us want to take that risk? “