Wigan-born woman's support group for those suffering horrendous long-term effects of Covid-19

Louise, who lived in the borough until she was a teenager, set up the Post Covid Syndrome Support group on Facebook at the end of May and it now has around 1,600 members.

Many of them, including Louise herself, became ill some time in March and are still suffering from an horrendous and lengthening list of symptoms months later.

She related her own shocking experience, which included becoming so unwell that at one point she feared the disease would prove fatal.

Louise, who previously taught at the European School in Brussels, is warning of a long-term health “disaster in the making” from Covid-19 and is urgently raising awareness of her group at the highest levels of Government.

She is also providing somewhere people struggling to cope with suffering from the new coronavirus and having to learn about it as they experience it can share what is happening with others in a similar position.

Louise, 46, said: “I got Covid in March and like many milder cases was sent home, assumed to have recovered. I have been left with the devastating so-called ‘long tail’ effects.

“The group is for people having effects beyond the normal one-to-two week recovery period. Most of our patients are between weeks 10 and 20 and it is life-changing.

“The illness keeps changing and the doctors are learning on the job. The effects are shocking; a real mix of neurological, cardio-vascular and mental problems.

“I set the group up because I thought this was for the long haul. There is nothing recovered about us. This is potentially a disaster in the making.

“This is a multi-faceted, multi-organ illness and it warrants more investigation.”

Louise was initially taken into hospital but was then sent home after just one night on a Covid ward. She outlined the terrible health ordeal she then experienced.

She said: “The pressure in my lungs went on for six or seven weeks. It was horrific. I could feel this thick coating of mucus over my lungs.

“My fever got worse and was persistent and the headaches were dreadful. I had three weeks of chronic headaches every day and paracetamol wouldn’t shift it.

“I got dehydrated, had problems with diarrhoea and had stomach issues for about two weeks.

“I was sleeping solidly for 20 hours and experiencing chronic fatigue, almost like a sleeping sickness. I had a sore throat and was becoming hoarse and my glands were going up and down, and I’ve still got both of those.

“At the Easter weekend I was so ill I didn’t think I was going to make it. I wrote my will and put my affairs in order. The hardest thing I’ve ever had to do in my life was tell my elderly parents. I had to send them a What’s App message. I had to discuss my funeral arrangements with my sister.

“Luckily my doctor stepped up and I started going to a Covid-19 clinic, but several times I would feel I was getting better and turning a corner and then suddenly I would be sleeping for three days and experiencing headaches and diarrhoea again. This pattern went on for four or five weeks.”

In recent weeks Louise and many of her group members have begun experiencing further effects, including neurological and psychological sensations which have been extremely alarming.

She said: “I’ve had a few of what I can only describe as seizures, which was a real shock, and incidents where my stomach and liver regions have been vibrating.

“A lot of us have been experiencing psychological disturbances, where you fall asleep and then wake up hearing noises or feeling there are presences in the room or house.

“There are also phantom white flashes when you close your eyes at night and strange moving balls of light and darkness have been reported. It’s very strange.”

Louise is alarmed by the speed at which people have been joining the group and reporting that they too are experiencing long-tail Covid-19 effects.

It is estimated as many as one in 20 patients who have had the disease have not recovered within a fortnight.

Group members are asked to fill out a survey on their experiences of the condition, and this is then compared to those who have tested positive. Louise says the results are strikingly similar.

She is now trying to get top politicians and medical experts together to discuss the potential scale and severity of long-term Covid-19 effects as quickly as possible as well as drumming up more support in the House of Commons by getting members to write to their local MPs.

A petition on Change.org asking for NHS executives and health minister Matt Hancock to work together on establishing regional rehabilitation centres already has thousands of signatures.

Louise says this is particularly vital as many of her group’s members never got positive tests, either because they didn’t go to hospital and were ill at home, because tests were often not reliable in the early stages of the pandemic or because they shed their antibodies before a test could be administered.

This, she fears, could potentially leave them without support in the future.

She said: “We need help right now. We are not scientists, we are not doctors, we are a rapidly-growing group of people, a real eclectic mix of formerly-healthy people including marathon runners, professionals and people that work in hospitals, some with underlying medical issues but many not. Covid-19 does not differentiate.

“We need to be heard, have some support measures put in place and allow the Government to plan how they are going to support these people who are unable to go back to work, have been fired, lost their jobs or business and to ensure that they are monitored and access the treatment that may become available in due course.”

Louise is adamant that no blame should be put on the health system or anyone working in it, saying that it was right of NHS Trusts to concentrate on looking after their sickest and most vulnerable patients to save lives and that it was inevitable lessons would be learned as the pandemic developed as no-one had ever encountered this new coronavirus before.

She praised staff for doing their best in very difficult circumstances and said it was obvious the strain it had put on them.

Louise is also speaking to leading mental health charities about mental health support, saying many group members are finding their long-term illness tough to cope with and are feeling overwhelmed.

She urged anyone who has had Covid-19 and is still experiencing symptoms to join the group, which is available by searching for Post Covid Syndrome Support on Facebook.