On March 17th 2020, France locked down for the first time during the Covid-19 pandemic. Five years later, sufferers of a condition that’s become known as Long Covid are still struggling to obtain recognition and effective treatment plans. FRANCE 24’s Claire Paccalin has met with Long Covid patients and specialist doctors who are searching for answers.
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00:00Well, it was also a March 17th, five years ago in 2020, when France locked down for the
00:06first time during the COVID-19 pandemic.
00:09Five years on, sufferers of a condition that's become known as long COVID are still struggling
00:14to obtain recognition and effective treatment plans.
00:18France 24 senior reporter Claire Pacquiao met with long COVID patients and specialist
00:22doctors who are still searching for answers today.
00:25And she joins me now on the set to talk a bit more about all of this.
00:28Claire, what exactly is long COVID?
00:31What are the symptoms?
00:32Well, there are many different symptoms, but very often sufferers will have severe exhaustion.
00:38They could have muscle aches, some develop food allergies, regular fevers, some have
00:44heart conditions, but there are many, many symptoms.
00:47And that's what's so complex about this is that it's hard to define exactly what it is.
00:52I met Marianne with my colleague Gaëlle Fonseca from the French channel, from François
00:57French channel.
00:58Marianne is in a wheelchair.
01:00She was a very healthy, fit woman with a dream job.
01:04She designed video games for a big French company.
01:08She got COVID at Christmas 2022.
01:11She got it really badly.
01:12She ended up in the emergency services.
01:13She was really quite unwell.
01:15And she's just never recovered.
01:16So there you can see her on the sort of spot of her sofa bed.
01:19And she basically never leaves that spot.
01:21She goes out a couple of times a week for a medical appointment in a wheelchair.
01:25And the rest of the time, day and night, she's in that spot where we met her on the
01:30sofa bed.
01:31She's wearing a mask there because we were there.
01:33And obviously, we were masked as well.
01:35And she's bedbound.
01:37And for her, COVID-19 and the long COVID that she's developed has ruined her life.
01:43Her eyesight's got worse.
01:45She's got these food allergies.
01:46She told us, I used to love tomatoes.
01:48Tomatoes are one of my favorite foods.
01:49You can't eat tomatoes anymore.
01:50She'll get serious stomach pains.
01:53She could get a fever.
01:55And she's desperate to get some kind of recognition for it and to get treatment for it.
02:00We actually were there when she had an online consultation with her doctor in Paris.
02:05So the professor, Salman Serhan, she's a well-known specialist in long COVID.
02:09She should actually be retired by now.
02:11But as a doctor, she says she doesn't want to abandon her long COVID patients.
02:15And we filmed their consultation and we filmed an interview with them afterwards.
02:19And I think we can play an extract from our report now.
02:22My life is no longer a life.
02:26It's about survival.
02:28I'm always thinking about how much pain something will cause me.
02:31Physically, you can't see it.
02:33She looks like a woman like you, who could very well go out and work.
02:37But as soon as she starts doing anything, her body cannot keep up.
02:41Patients like this are invisible.
02:43And yet they are really suffering.
02:47So Claire, we just heard the doctor there saying, you know, a lot of times you can't
02:49see it.
02:50But given that, how is it diagnosed?
02:52It's very tricky to diagnose.
02:55This is where it gets really complicated.
02:56There is no widely agreed way to diagnose long COVID at the moment.
03:02We visited a clinic, though, the Clinique du Parc near Montpellier in the south of France.
03:06And we spoke to the doctor who set up that clinic.
03:08It's a long COVID clinic.
03:10And he said that what he does is he puts patients over the course of a day through a series
03:15of different tests.
03:16MRI scan, lung scan, x-rays, physio appointments, neuropsychological examinations, a whole
03:20load of tests.
03:21And he's basically trying to rule out all the other conditions.
03:25He's ruling them all out.
03:26He's eliminating them.
03:27And at the end of the day, he will then decide whether he can diagnose that person with long
03:32COVID.
03:33So we were there when he when he met Alexandrine, a woman who got COVID three years ago.
03:39Again, her life.
03:40She's not in a wheelchair.
03:41There she is.
03:42That's Alexandrine.
03:43She's not in a wheelchair, but she can't walk long distances.
03:45She was a health assistant.
03:46She worked in the health care profession before, but she's had to give up her job.
03:50She's got two teenage sons.
03:51It's not easy for her at all.
03:54Her personal life has been turned upside down as well in all of this.
03:57And we were there when Dr. Larcher, who who set up this long COVID clinic, he actually
04:03announced that he is Dr. Larcher when he announced that he was diagnosing her with long COVID.
04:08So we can we can listen to that now, too.
04:12We've carried out enough tests to be sure that there is no other diagnosis.
04:16That means we can now formally state that you have long COVID.
04:23So what's it like for some of these patients who finally get a name to what they're feeling
04:27after in Alexandrine's case, three years, for example, of feeling unwell?
04:31Certainly for her, it was it was a vindication.
04:33She felt that her condition had been recognized.
04:35She said that she said to us, I knew I had it.
04:38The problem was family and friends weren't believing her.
04:41So she was going around with this condition that I never recovered from my COVID.
04:45I know it was a long COVID, but she struggled to get a diagnosis because it's hard to diagnose.
04:50And also she was struggling to get her friends and family to understand she's desperate to
04:54get her life back.
04:55She would love to go back to work.
04:56She would love to be the person that she was before.
04:58But she's exhausted the whole time.
05:01She has muscle ache.
05:02She's got problems with that with the bones in her in her arm.
05:05She has what's called brain fog.
05:07So difficulty concentrating and even speaking to her, you could tell that she she would
05:12sometimes struggle to get her words out or she would ask you to ask the question again
05:16because she has this brain fog.
05:18And she discussed this stress and anxiety that she suffers because friends and family
05:23members, even family members are not believing her that she has this condition.
05:27And she discussed this with a neuropsychologist who who who told us this is something that
05:32people really need to understand.
05:33This is a real condition.
05:34Long Covid exists and there are sufferers out there who need help.
05:38So we can play that extract now as well.
05:42Everyone says it's in your head.
05:43It doesn't exist.
05:44A lot of people think that long Covid is a purely psychological condition, but that's
05:52not the case.
05:54They're punished twice, first by their illness and second by friends, family and society
06:01in general.
06:02I feel alone when people say that.
06:08I'm determined to prove that I have long Covid.
06:12I know how I feel.
06:17So I imagine once it's been diagnosed, it's a relief for patients.
06:20But I mean, that's just the beginning of their journey from there on out.
06:23What can doctors do to help people who are suffering like Alexandrine from long Covid?
06:27We were there when Dr. Larcher diagnosed her, but then he also had to break the news that
06:33there is no known treatment for long Covid.
06:35And Alexandrine sort of said, I came here, I thought that there was going to be something
06:39that could be done.
06:40And he said, there are things that we can do, but there's no treatment for the moment,
06:44which will actually really target the cause of your long Covid.
06:49So he recommended that she has some speech therapy, that she gave her sort of strategies
06:53for managing her energy levels.
06:55He also recommended respiratory physiotherapy as well.
06:59And he will he will accompany her.
07:01She'll go back and see him in a few months time.
07:03And she's now on a register of people who have been diagnosed with long Covid.
07:07So if any promising treatments emerge, she will be notified.
07:11But for her, it wasn't so much being told she had long Covid that was the shock.
07:16It was that there's no treatment for it.
07:18So there's things we can do to help you.
07:21But we just don't know where we're going with this.
07:23And do we know how many patients have long Covid in France, at least?
07:27Well, that's another tricky question is because it's hard to diagnose.
07:30How many people will be living with it and have not been diagnosed?
07:33Also, there's a big spectrum.
07:34So there are those like Marianne, who has it so badly that she's in a wheelchair.
07:38And then there are those who are able to they've adapted their lives, but they may be able to
07:43continue working depending what their job is, or they may be functioning independently.
07:48So there is a spectrum.
07:49And we spoke to doctors and researchers about this and how many people have it.
07:53And of course, there are those who have had it since 2020, but who may have recovered
07:56by now as well.
07:58The number is difficult, but Dr. Larcher, who was in that report, he said to us he thinks
08:03from what he's seen and from what he has read in research on this, that there are probably
08:08around 4% in France of people who contracted Covid-19, who have developed some form of
08:14long Covid.
08:15So that 4% is kind of what we're going with at the moment.
08:19But again, more research needs to be done to work out, yes, how many people are actually
08:23suffering from this.
08:24And of course, France is known for having very solid, good health care.
08:27I mean, what is the government doing so far to fund treatment plans for people with long
08:31Covid?
08:32Well, this is a sore spot.
08:33So three years ago, two years after the first lockdown, the government voted in legislation,
08:39special long Covid legislation.
08:40There was a programme that was supposed to be put in place to gather data on the number
08:44of sufferers and also a programme to give them specific medical support.
08:49Now, this legislation, which was voted in three years ago, has not yet been applied.
08:55So there are now senators and deputies pushing the government, asking the government.
08:59There's clearly a lack of resources, a lack of will perhaps as well.
09:03But for the moment, that legislation that was voted in three years ago has not been
09:07applied.
09:08And so we're finding, for instance, the clinic that we visited in Montpellier, that didn't
09:12get national funding.
09:13It got funding from the regional health agency in the Occitanie region.
09:18So it was able to get up and going thanks to the regional health agency.
09:23But it was struggling when it came to getting that connection with the national ministry
09:27of health.
09:28So it's a sore spot.
09:29And of course, many sufferers and doctors who are working in long Covid are hoping that
09:33that legislation that was voted in three years ago actually comes into force.
09:37All right, Claire, well, thank you for that.
09:38And thank you for your reporting, along with Gael Fonseca, into long Covid to perhaps move
09:42things a little bit more along, if possible.
09:45Claire Pecalan, thank you so much.
09:46And that full report will be broadcast in an hour's time at 2.45 p.m. Paris time.
09:51So be sure to stay tuned to check that out.
09:54Coming up for you now across Africa, a roundup of the week's cultural and current affairs
09:58stories from around the continent on France 24.
10:00Stay with us.