bertiedog
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I have gone through the podcast of the above programme and written out some main parts of it which might be of interest to people here because CFS is mentioned a few times and I was wondering about the implications for ME sufferers.
Adam Rutherford who is a doctor was the Presenter who got sick in March but still has symptoms of fatigue and breathlessness. He was interviewing a few expert doctors in the UK to try and find out exactly what could be going on.
It was mentioned that the immune system recognises damage and immune cells can accumulate causing a cytokine storm which will affect permeability of the cells and this would include the blood/brain barrier. There are receptors in the brain, and these could be affected with some virus still hanging around.
However, they don’t think this is happening in many cases but it is possible in a few who still test positive but usually these people tend to have a lot of underlying conditions possibly taking lots of medications. They aren’t sure if it is the same virus they originally had or if they have caught another one. There is definitely a subgroup who are still carrying the virus. Studies are ongoing.
Obviously science is in its infancy as Covid 19 is less than a year old. Many sufferers of Long Covid in the UK remain hidden with GPs unable to help in a substantial way. (This particularly reminded me of ME sufferers).
A professor at Leeds University has recently set up a Pathway Programme which is a screening tool to access people with Long Covid which will direct them to various specialists where they can undertake the programme. They will assess how many patients are coming from a hospital setting originally or from the community. It starts off as an online questionnaire regarding symptoms with patients giving each one a grade on a scale of 1-10 –
Fatigue is a very common symptom after Covid and this group will focus on this. The Professor used as an example the question of returning to work. Was it phased? Did they maintain a diary with a note of activities which can illustrate days when they feel worse so that the patient might be able to work out or connect certain activities as to why that day might have been poor with increased fatigue.
The doctor stressed you must preserve yourself as you improve. After 6 months the more chronic the fatigue becomes, it is very difficult to untangle long term because the nervous system becomes involved and it’s more likely to become embedded. He used the analogy of a bank balance and if it is low and you spend it all at once you can enter boom and bust. With the symptom of fatigue you overdo things on one day and you end up unable to do anything for 4 days then you need to be very selective about what you do to keep that bank balance so that you are still in business.
There is something like CFS, which people believe is post viral, and sets in long term but they don’t want people with Long Covid ending up with CFS.
The presenter asked the question – by keeping a diary as suggested above why is rehabilitation so important and what is the evidence behind this?
The professor who is running the Pathway group answered that when they looked at previous outbreaks like SARS and MERS things like CFS and chronic pain syndromes were found in patients who were struggling for up to 3 months and beyond and from this he went on to say that they now know it can last a long time but they don’t know if these symptoms were to be picked up EARLY and the right interventions are put in place with specialist help, whether they can avoid longer term problems
The professor stressed that this is a hypothesis at the moment because in the past outbreaks they didn’t have any opportunities to intervene, it’s only with Covid they can try this approach.
This personalised assessment brought home to the presenter the scale of the problem. There are tens of thousands of people with Long Covid but they didn’t know actually how many and now winter is coming with infections on the rise and another group of Long Covid sufferers will follow so time is of the essence.
It’s young people who contribute to the economy and these are the ones affected – they don’t want this productive workforce disabled long term so they want to avoid that and get people back in action and avoid chronicity long term. The presenter stressed that it is most important they recognise that Long Covid actually exists, that the medical profession seek to understand its biology and we acknowledge that it is serious for those who have it and also for the NHS and for society.
Pam
Adam Rutherford who is a doctor was the Presenter who got sick in March but still has symptoms of fatigue and breathlessness. He was interviewing a few expert doctors in the UK to try and find out exactly what could be going on.
It was mentioned that the immune system recognises damage and immune cells can accumulate causing a cytokine storm which will affect permeability of the cells and this would include the blood/brain barrier. There are receptors in the brain, and these could be affected with some virus still hanging around.
However, they don’t think this is happening in many cases but it is possible in a few who still test positive but usually these people tend to have a lot of underlying conditions possibly taking lots of medications. They aren’t sure if it is the same virus they originally had or if they have caught another one. There is definitely a subgroup who are still carrying the virus. Studies are ongoing.
Obviously science is in its infancy as Covid 19 is less than a year old. Many sufferers of Long Covid in the UK remain hidden with GPs unable to help in a substantial way. (This particularly reminded me of ME sufferers).
A professor at Leeds University has recently set up a Pathway Programme which is a screening tool to access people with Long Covid which will direct them to various specialists where they can undertake the programme. They will assess how many patients are coming from a hospital setting originally or from the community. It starts off as an online questionnaire regarding symptoms with patients giving each one a grade on a scale of 1-10 –
- Walking up a flight of stairs
- Dressing yourself
- Voice
- Mobility
- G I health
- Anxiety
- Depression
- How do your symptoms affect your working life?
- Cognition – Concentration, Memory, Working with Colleagues
- Fatigue
- Breathlessness
Fatigue is a very common symptom after Covid and this group will focus on this. The Professor used as an example the question of returning to work. Was it phased? Did they maintain a diary with a note of activities which can illustrate days when they feel worse so that the patient might be able to work out or connect certain activities as to why that day might have been poor with increased fatigue.
The doctor stressed you must preserve yourself as you improve. After 6 months the more chronic the fatigue becomes, it is very difficult to untangle long term because the nervous system becomes involved and it’s more likely to become embedded. He used the analogy of a bank balance and if it is low and you spend it all at once you can enter boom and bust. With the symptom of fatigue you overdo things on one day and you end up unable to do anything for 4 days then you need to be very selective about what you do to keep that bank balance so that you are still in business.
There is something like CFS, which people believe is post viral, and sets in long term but they don’t want people with Long Covid ending up with CFS.
The presenter asked the question – by keeping a diary as suggested above why is rehabilitation so important and what is the evidence behind this?
The professor who is running the Pathway group answered that when they looked at previous outbreaks like SARS and MERS things like CFS and chronic pain syndromes were found in patients who were struggling for up to 3 months and beyond and from this he went on to say that they now know it can last a long time but they don’t know if these symptoms were to be picked up EARLY and the right interventions are put in place with specialist help, whether they can avoid longer term problems
The professor stressed that this is a hypothesis at the moment because in the past outbreaks they didn’t have any opportunities to intervene, it’s only with Covid they can try this approach.
This personalised assessment brought home to the presenter the scale of the problem. There are tens of thousands of people with Long Covid but they didn’t know actually how many and now winter is coming with infections on the rise and another group of Long Covid sufferers will follow so time is of the essence.
It’s young people who contribute to the economy and these are the ones affected – they don’t want this productive workforce disabled long term so they want to avoid that and get people back in action and avoid chronicity long term. The presenter stressed that it is most important they recognise that Long Covid actually exists, that the medical profession seek to understand its biology and we acknowledge that it is serious for those who have it and also for the NHS and for society.
Pam
