BBC Radio 4 - Woman's Hour, Women and Long Covid

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New research out this week suggests that 1 in 45 people who get COVID-19 will continue to be unwell after three months, even if their initial infection was mild. And, under the age of 50, it does seem that women are more likely to develop Long Covid than men. People with Long Covid report on-going symptoms including fatigue, headache, shortness of breath, problems concentrating - ‘brain fog’ - and heart palpitations, which leave them unable to work, look after their families or even get off the sofa.

Support groups and campaigns to get recognition and treatment for this new and debilitating illness have sprung up – most of them led by women. Their efforts are now beginning to bear fruit, with among other things a network of Long Covid clinics recently announced for some parts of the UK. What more needs to be done?

Jane is joined by a panel of experts and campaigners to hear from some of you about how Long Covid has changed your lives since March, and to discuss the latest developments.

Dr2NisreenAlwan LongCovidSOS HCTNHS Because dpressed menopausal women should have zero treatment or respect.

Dr2NisreenAlwan LongCovidSOS HCTNHS Thanks for raising awareness & appreciate time & effort volunteers put into sharing their experience at the expense of using their spoons of energy. Best wishes.

Dr2NisreenAlwan LongCovidSOS HCTNHS This is bigger than Long Covid. Women with chronic illness are dismissed as stressed/depressed/menopausal. I spent 30+ years fighting this & at 47 was finally written off with “it’s your age”. I actually had toxic iron levels from genetic haemochromatosis, plus hEDS & POTS.

Dr2NisreenAlwan LongCovidSOS HCTNHS You said 'women'.

People with ME/CFS get told the same thing.

Please take up these points about ME. Now is the time to taise awareness of post viral syndromes and take them seriously.

Dr2NisreenAlwan LongCovidSOS HCTNHS The implications of this are so huge - physical and mental health, the even longer term health impacts, disability, employment, financial - SSP is not sufficient and what even is ESA..🤷‍♀️🤦‍♀️🤯

Dr2NisreenAlwan LongCovidSOS HCTNHS Great to hear long_covid & LongCovidScot members phoning in. Had a chat w/ Morag after. She wanted me to add that while she “had to look after herself physically, [she] got emotional support from friends but mostly my mental and emotional life jacket was the support groups”

Any man who pays the Licence Fee must be clinically insane DefundTheBBC

Good to raise awareness. I hope that research on this might have a knock on effect of helping those suffering from similar.

Dr2NisreenAlwan LongCovidSOS HCTNHS U shd also be reporting on hugely neglected & stigmatised illness with longcovid symptom overlap, MECFS, affecting 1000s, mainly women MECFS trt in UK=a scandal. I’m tube fed 2b kept alive yet focus has bn CBT &exercise &virtually no biomed research. Please investigate& help

Dr2NisreenAlwan LongCovidSOS HCTNHS Great to hear this being discussed. For anyone struggling there are free yoga therapy classes for people with Long Covid, starting online in November

My dad just listened to this (and the previous programme on LongCovid ) and suggests 'I think they need to do another programme, concentrating on the possible ways forward.'

This was really interesting.

Huge virtual hugs to all those involved in today’s programme. You are not alone. We may be in separate households but we are all in this together and thinking of each other

A typically thoughtful, compassionate and intelligent discussion / phone in, led by the incomparable Jane Garvey who makes this hour of the day and this kind of radio program the very best. Going to miss you hugely.

What about the effects of the lockdown itself: less (or different regime of) exercise, less socialising, less fresh air, lower exposure to sunlight, etc. This potential cause of ill health must be considered alongside COVID19.

Will you give any contact details for this virtual clinic we heard of in your show today ?

Excellent you are highlighting LongCovid today, listening to your contributors makes my symptoms almost pall into insignificance. GP's need to come out of hiding in their understair cupboards & show some interest in their patients health or return their salaries!

Dr2NisreenAlwan LongCovidSOS HCTNHS PLEASE could you mention MCAS! I'm a GP and MCAS expert. We are seeing improvements in some LongCovid patients (as we do with some people with MECFS) using simple mastcells treatments such as loratadine.

Dr2NisreenAlwan LongCovidSOS HCTNHS All sounds similar to the long term impact of chemotherapy and radiotherapy, even if the treatment was short term. One has to make adjustments to cope with everyday life. Respiratory system is affected, chronic fatigue, sleeplessness, unable to get up some days.

Fatigue isn't 'just tired', it dictates your whole life. Four years after finishing chemotherapy, my life is still governed by fatigue, am sad to hear more people now affected by this

I got diagnosed with fibromyalgia this year. Symptoms are very relatable when I am feeling my worst.

Dr2NisreenAlwan LongCovidSOS HCTNHS I am 62, a competitive coastal rower and have had longcovid since beginning of May. Still not back at work. Thank you for highlighting LongCovid issues.

Please draw attention to the fact that long COVID is similar to M.E. (myalgic encephalomyelitis) which affects more women than men too, occurs after bacterial or viral infections, and is significantly underfunded and under researched compared to this new post viral illness.

I was so looking forward to this programme and the first sentence out was that women have long covid more than men. This is not true. Please please please, us with long covid are battling misinformation left, right and centre. I was so hoping that woman's hour would do better.

Almost killed me at 46, my 3 year old son and my husband. Long Covid case here. Slow road to recovery.... 👍

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