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A thread about #longcovid.
Many people are reporting ongoing symptoms after a suspected case of #Covid_19.
Some find it very debilitating and objective medical tests often show something is going on.
Those suffering feel like they're not taken seriously. Why?
1/n
Many people are reporting ongoing symptoms after a suspected case of #Covid_19.
Some find it very debilitating and objective medical tests often show something is going on.
Those suffering feel like they're not taken seriously. Why?
1/n
If you've got #LongCovid, know that I believe you and this thread isn't intended to invalidate what you're going through.
First, some general things we know;
1. Recovery time from any illness can be variable.
2. People who've had a virus often show post viral syndrome.
2/n
First, some general things we know;
1. Recovery time from any illness can be variable.
2. People who've had a virus often show post viral syndrome.
2/n
3. That post viral syndrome symptoms have similarities to #ME and #CFS. Those with these conditions report painful experiences where they feel that they've not been taken seriously and abandoned by the medical profession.
3/n
3/n
But the symptoms of #ME, #CFS, and #LongCovid are very real to the patient and should be believed.
Thebdistress felt by both the patient and doctor when symptoms can't be explained or treated can be severe.
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Thebdistress felt by both the patient and doctor when symptoms can't be explained or treated can be severe.
4/n
So why are some symptoms not always medically explainable?
It's can be a reflection on the limits of medical knowledge and technology. Diagnosis is challenging if they don't result in abnormalities in tests or scans.
5/n
It's can be a reflection on the limits of medical knowledge and technology. Diagnosis is challenging if they don't result in abnormalities in tests or scans.
5/n
The lack of a diagnosis may not matter if the symptoms can be effectively treated.
But what if there is no diagnosis and no treatment?
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But what if there is no diagnosis and no treatment?
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The perception that medicine has advanced so far that it can explain anything raises questions of who is to blame when it cant.
Patients can question the competence of the doctor, question why they haven't done a test, and can feel like they're not believed.
7/n
Patients can question the competence of the doctor, question why they haven't done a test, and can feel like they're not believed.
7/n
Doctors can assign personality or psychological reasons for not being able to medically explain the symptoms.
Having no medical avenues left, a doctor may in good faith offer psychological support with the symptoms they can't treat.
8/n
Having no medical avenues left, a doctor may in good faith offer psychological support with the symptoms they can't treat.
8/n
The consequence for the patient is that they are suffering, and feel like they're suffering alone.
Patient's with #LongCovid often express similar feelings.
But there is lots of hope for people with long covid, I summarise in the next few tweets.
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Patient's with #LongCovid often express similar feelings.
But there is lots of hope for people with long covid, I summarise in the next few tweets.
9/n
Its been acknowledged!
In July Matt Hancock, the Secretary of State for Health, acknowledged it as a concern.
https://news.sky.com/story/coronavirus-matt-hancock-worried-about-debilitating-long-term-impact-of-covid-19-12028821
10/n
In July Matt Hancock, the Secretary of State for Health, acknowledged it as a concern.
https://news.sky.com/story/coronavirus-matt-hancock-worried-about-debilitating-long-term-impact-of-covid-19-12028821
10/n
In September a new page on long term health effects went live on http://gov.uk
https://www.gov.uk/government/publications/covid-19-long-term-health-effects
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https://www.gov.uk/government/publications/covid-19-long-term-health-effects
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Its being researched!
In August the UK government announced £8.4m had been given for research into long term health impacts of #Covid_19
https://www.gov.uk/government/news/research-study-into-long-term-health-impacts-of-covid-19-launched-in-the-uk
12/n
In August the UK government announced £8.4m had been given for research into long term health impacts of #Covid_19
https://www.gov.uk/government/news/research-study-into-long-term-health-impacts-of-covid-19-launched-in-the-uk
12/n
Its being counted!
The Zoe app by @timspector is counting the long term symptoms daily. It has over 4m users.
There is also some suggestion that the new NHS app will allow you to submit symptoms as well, but im not sure how focused it is on longterm symptoms.
13/n
The Zoe app by @timspector is counting the long term symptoms daily. It has over 4m users.
There is also some suggestion that the new NHS app will allow you to submit symptoms as well, but im not sure how focused it is on longterm symptoms.
13/n
Treatment
The research may result in a clear explanation for the symptoms and treatment. Even if it does, it may be some time before the body of evidence supports issuing of proper guidance.
But what about those suffering now?
14/n
The research may result in a clear explanation for the symptoms and treatment. Even if it does, it may be some time before the body of evidence supports issuing of proper guidance.
But what about those suffering now?
14/n
Doctors may be able to treat some symptoms. But if #LongCovid is something new and unknown, could the risks outweigh the benefits? It may be safer to wait.
Persistant physical symptoms without treatment is distressing.
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Persistant physical symptoms without treatment is distressing.
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Don't be afraid that treating anxiety symptoms means your physical symptoms have been written off as psychological, or that it means that its all in your head.
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16/n
Lastly, some people say that #LongCovid is permanent and can result in life long disability. We can't know that yet. There may be some cases where thats true, but we know how amazing the body is at healing. The odds are in our favour.
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So forgive your doctors if you feel like you've not been taken seriously.
They want to help and, when they know how, they will.
18/n
They want to help and, when they know how, they will.
18/n
A great Cardiologist to follow is @ProfDFrancis. He is superb at demystifying some of the reported #LongCovid symptoms.
https://twitter.com/ProfDFrancis/status/1308197492803145733?s=19
19/end.
https://twitter.com/ProfDFrancis/status/1308197492803145733?s=19
19/end.
Extra: Here is a great thread where @ProfDFrancis asks his doctor followers how they would handle a a case where they're unable to offer treatment. https://twitter.com/ProfDFrancis/status/1307408413077516292?s=19
