What would you like the long-COVID research project to achieve?

Long COVID public forum
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Please share your comments on what you would like the long-COVID research project to achieve…

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I would like the project to deepen our understanding of COVID and the consequences

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I would like the project to help understand how long it takes to recover from Long Covid and why it takes the length of time it does

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Long-COVID could be caused by different things in different people. It would be good to better understand how long-COVID works in different people.

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I’d like more public awareness of the risks and consequences of long covid for individuals and for society. I’d also very much like to see government policies that acknowledge this - so hope this will prove influential.

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Answers to help those with Long Covid now and in the future

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Considering where we are at now (December)
Understanding the consequences of Covid as Long Covid
Addressing the health system’s response to request for help with Long Covid
More thoughts to come…

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Yes I total agree to get a better understanding of long covid

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One of the issues that have struck me is the health system’s response to long Covid, i.e. unless there are clear health issues that affect organs, leading to a medical response, then it is a lottery as to if and what help those affected get. It also seems to be geographically inconsistent. Therefore research could look at the response(s) on offer and where it comes from (both service-type and location) and whether people (patients and families) feel this is adequate.

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What causes long Covid in certain people, considering that some had a very light original Covid infection and a defined treatment path (difficult when there’s such a variation in LC problems). LC should be recognised as a serious health problem and there should be a consistent nationwide approach to dealing with it. As previously mentioned it is geographically inconsistent and still widely misunderstood.

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I should add that I’ve personally had to really push to (a) establish with GP I really have LC and (b) get referred to any slightly relevant service. It shouldn’t be this difficult so let’s hope the research convinces everyone that we really have a medical condition.

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I think that priority should be placed upon diagnostics. This is the foundation on achieving good outcomes, in my view.

  1. An effective and well designed diagnostic process should encourage trust between patients and clinicians. It should make patients feel socially and clinically supported - that their concerns are being taken seriously even if treatment options remain limited.
  2. Developing and refining diagnostics is integral to furthering knowledge of the virus itself, and in formulating policy for future pandemics and potentially other, unrelated diseases.
  3. Currently, in my opinion, diagnostics are failing the majority. Some issues seem to be unique to COVID - e.g micro-blood clotting. The development of new tests should be seen as essential to developing treatment.
  4. However, there are fundamental issues that must be addresses at the wider level. Access to existing (non-covid specific) diagnostics is unfeasible for significant sections of our population. Access to GP’s is an issue. The ability to travel to diagnostic centres (especially when ill, rural or shielding) is an issue.
  5. Further, our healthcare system is segmented in a manner that undermines diagnostic processes. A Long Covid patient could, potentially, be flagged for referral to a cardiologist, a respiratory specialist, a neurologist, a physiotherapist or a rheumatologist. All specialisms could, theoretically, have input of value. But the means for cross-specialism consultancy are limited. The likely patient experience, will be of waiting months to seen at individual departments. Such processes are often time-consuming, demoralising and inefficient.
  6. The development of new, efficient tests is, surely, absolutely critical to formulating any long term response to COVID. It also has much broader significance for healthcare/patient outcomes as a whole.