BBC Radio Ulster: Should NHS ME/CFS specialist service provision be made available to people with Long Covid?

March 11, 2021

“The ideal situation, as we have actually got in Cornwall, is where the Long Covid clinic and the ME/CFS clinic are separate but they are linked. They are sharing knowledge, especially about management of the two conditions, but they are separate.”

Dr Charles Shepherd. 

Russell Fleming, Content Manager, ME Association 

Yesterday evening, Dr Charles Shepherd (Hon. Medical Adviser to the ME Association) and Joan McParland from Hope 4 ME & Fibromyalgia Northern Ireland, took part in a BBC Radio Ulster discussion. 

Hope 4 ME & Fibromyalgia Northern Ireland with help from Dr Shepherd has been trying for some time to get NHS specialist services for ME/CFS introduced in the country but have not been successful.  

Now that Long Covid has become an issue, it appears that the health and social care authorities are more willing to consider specialist service provision so long as it serves both conditions. 

“The ideal situation, as we have actually got in Cornwall, is where the Long Covid clinic and the ME/CFS clinic are separate but they are linked. They are sharing knowledge, especially about management of the two conditions, but they are separate.”

Dr Charles Shepherd. 

ME/CFS & Long-Covid Hospital-based Services 

Please note: My views are not necessarily representative of the ME Association and are aimed at initiating a discussion on this important topic. 

While this is a key concern in Northern Ireland and could be for other areas in the UK where there are no existing ME/CFS services; I am aware that in England, for example, established ME/CFS specialist services are now sharing resources with Long Covid clinics.  

But is there a case for combining ME/CFS and Long Covid clinical support? 

Sharing resources could be seen as a good thing in that is has the potential to bring more funding and resources into ME/CFS hospital-based referral services which in some areas have seen funding cut or have had to close.  

A combined service could, for example, mean specialist provision is improved in key areas like Northern Ireland, Wales, and Scotland.  

But would the inclusion of Long Covid minimise provision for ME/CFS? 

My own view is that the Covid infection is another potential trigger for a post-viral fatigue syndrome and ME/CFS and that people with Long Covid should benefit from the expertise we have available.  

You might be of the opinion that people with Long Covid, despite sharing many symptoms with ME/CFS and being likely to benefit from similar management approaches, should remain apart from ME/CFS.  

Perhaps your view is that ME/CFS is uniquely different from Long Covid despite some people who have this post-Covid symptomology being subsequently diagnosed with ME/CFS.  

Or you could believe that the management approaches to each condition should be different and that by including Long Covid it might mean a reduction of existing care and support for people with ME/CFS. 

I think there are synergies that can be exploited to bring benefit to people with ME/CFS and those with Long Covid. I also think we will hear of more health and social care authorities who believe it makes economic and clinical sense to consider combining or at least sharing expertise and support that is available within the NHS. 

How might we share our knowledge? 

I think combining or sharing service provision and expertise could on balance be a good thing, so long as there are key experts on ME and on Long Covid available because there are key differences in some and patients need to be triaged accordingly. 

It might mean clinical commissioning groups (CCGs) and other NHS funding bodies are keener to continue with or to commission hospital-based referral services and this I think is a good thing overall. 

We have heard how NHS England, for example, made £10 million available to establish more than 60 Long Covid clinics and part of me thinks it would make sense to share this with the expertise available in ME/CFS clinics. 

I am less clear on how the new NICE clinical guideline for ME/CFS (and the existing one for Long Covid) might work together within the NHS when at present these are still being treated as separate conditions and some of the management advice for Long Covid leaves a great deal to be desired (graded exercise for example).  

I certainly wouldn’t support any dilution of provision for people with ME/CFS – albeit that some would argue the ME/CFS provision is inadequate at best – but there is I think a strong argument for pooling resources and sharing expertise; especially if this results in stronger provision and new services where there are no services currently for ME/CFS or Long Covid. 

Referral systems 

I would want to see Covid-19 specialists recruited to work in any combined service to help Long Covid patients manage any ongoing breathing and organ damage issues, for example, and a clear referral system to respiratory and cardiovascular medicine etc. just as there should be a clear referral system for people with ME/CFS to neurology etc. 

But then I have come to view Long Covid as an example of another post-viral fatigue syndrome for many, and little different to the post-viral fatigue syndrome that led to my own diagnosis of ME over twenty-years ago.  

I know members of the Long-Covid community won’t necessarily agree with this view, and I am not saying it is true for all cases of Long Covid of course – those who are affected specifically by organ damage for example – but for many I believe that it is and that research will support come to support this view. 

I also happen to believe that Long Covid research especially when it includes people with ME/CFS will bring a great benefit to the ME/CFS patient community; others do not share my views of course. 

I get that people in the Long Covid community don’t want to face the stigma and dismissive attitudes that we in the ME/CFS community have done in the last fifty years.  

But much of this has and will continue to change, and by not working with the ME/CFS community, I think people with Long Covid risk missing out on the help and support we can provide. 

It is a topic that should be discussed and we’d like to hear your opinions 

  • Should NHS ME/CFS service provision be extended to include people with Long Covid 
  • Should ME/CFS services share clinical expertise especially in terms of ongoing management advice 
  • Should ME/CFS services be kept separate in all instances until a person with Long Covid is diagnosed with ME/CFS? 

Please join the discussion on social media or you can send in your thoughts via email to: 

Dr Shepherd and Joan McParland share their views in the BBC Radio Ulster broadcast (see below). 

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