ME Association Transcript (10 March 2021)
- Listen to the recording – it runs from 1hr 47 minutes to 1hr 55 minutes and is available for until 8th April 2021.
A charity which helps people who have ME says it is frustrated and dismayed after they were told by the health and social care board that specialist treatment for the condition could be combined with proposed services for Long Covid.
Well, since its formation in 2011the charity has been lobbying for specialist ME services here, but they say they haven’t had much joy. This is an issue that we have talked about before, so we’re keen to update you here on the programme.
They are now concerned that the situation could actually be made worse if the two conditions are grouped together for targeted care. Meanwhile a specialist has warned that attempting to link the two conditions here could swamp the service with Long Covid sufferers and those with ME could miss out.
Well, Joan McParland is a spokesperson for the charity and also a long-term ME sufferer, and Dr Charles Shepherd is medical adviser to the ME Association. Nice to have you both with us.
Joan, if I can start with you. How concerned are you now that in your view, rather than things improving, they may get worse?
Well, first of all Kenneth, thank you for highlighting the ongoing ten-year plight of seven thousand ME patients in Northern Ireland; men, women, and children.
We did foresee this situation coming with Long Covid, simply because the majority of us who have been incapacitated for decades, has all started with a viral onset disease which we never recovered from.
But to say that ME is Long Covid is just not acceptable, because we know what ME is – it is classified by the World Health Organisation – whereas the incidence, natural history, and aetiology of Long Covid symptoms is not even known.
So, in a ten-year campaign and promises after promises, we had the rug pulled out from underneath us three weeks ago, when it was suggested that we would be simply put into these Fatigue/Long Covid clinics with no ME experts.
We are absolutely gutted and really disheartened about this situation, and can I just say that in the matter of where we turn, we hit a brick wall.
Can I just ask, where did this come from? When did you first hear this was a possibility?
On the 24 February (2021). Up until then, the news we were waiting on was when the second round of interviews would be set up for a new ME clinical lead.
The first interviews took place in 2018. There was an ME clinical lead appointed, and he was messed about for a year until he walked away from the job.
And they had to start the whole process over again. Interviews were scheduled for October 2020 – two years later – and those interviews had to be suddenly cancelled because there was a mistake made and somebody thought we were going under the rheumatology clinic.
It’s absolutely just going round and round in circles. Actually, at the meeting on the 24 February, there was a rheumatologist there – a lovely gentleman – and he said rheumatology was not the place for ME. “We already have a six-year waiting list, what on earth would we do with another seven thousand patients?”
So, now we are really frightened that we are going to be thrown under how ever many Long Covid patients that are going to come out of this pandemic.
Dr Charles Shepherd if we could bring you in. How do we compare Northern Ireland to other areas in the UK in terms of providing care to those who have ME?
Dr Charles Shepherd:
Well, it’s really quite scandalous. In England, we have a system of hospital-based referral services; approximately I would think one service for every two million people. So, taking Northern Ireland’s popular of one-point-seven million people, there really should be at least one dedicated service.
I have been involved with Joan over all these years, trying to get a service up and running for people in Northern Ireland, and it really is shameful that this has not occurred.
As you have indicated, there are probably seven thousand five hundred people with this illness in Northern Ireland. Twenty-five per cent of them are severely affected and that means they are housebound, bedbound, certainly at some point in their illness.
There are major problems with primary care doctors making an accurate and early diagnosis, and they just don’t have anywhere to refer these patients to get expert management advice.
So, that is scandalous. Equally, Long Covid. We don’t know how many people have got Long Covid at the moment, we’re guessing it could be around one hundred and fifty thousand people (UK). It’s a tsunami arriving of another urgent need.
These are people who have got two layers of illness. Like ME/CFS it is a post-viral condition, and its got a layer of symptoms like ME/CFS, but on top of that the Covid patients have got respiratory symptoms – short of breath – they’ve got heart problems, they may have liver, kidney, and gut problems.
So, while they do have some ME symptoms with them, and there is quite a lot of overlap with ME and Long Covid, they really do need a specialist service that is going to access them properly, find out what’s gone wrong, and give them proper management advice, particularly in the areas of heart and lung problems that many of them have got.
Do you feel that because, obviously, that we are still getting to grips, as you say, with the extent of Long Covid that there might be that instant reaction to deal with that first as opposed to ME?
Dr Charles Shepherd:
With ME these are people who have built up over ten, twenty, thirty years. With the Long Covid people arriving of course, because most of these people have been ill at home they haven’t been to hospital, they were fit young adults in their twenties, thirties, and forties, and we’ve suddenly got 150,000 people throughout the UK with a totally new disease which is really very disabling. If you join up the two – and as I say, there are overlaps here where both conditions can be of help to each other – but if you join up the two – because of this enormous demand from Long Covid – the ME patients are just going to get, I think, put to the bottom of the queue. So, they really do need their own specialist service, just as the Long Covid people do as well.
Obviously, Dr Shepherd, you wouldn’t necessarily agree with it, but is there a case that has been made where the combining of the services makes either clinical or economic sense?
Dr Charles Shepherd:
I think as time goes on and we understand more about Long Covid, and we can separate out the people who have got a Long Covid illness that requires help from specialists in respiratory medicine, cardiovascular medicine, and those sort of things; I am convinced there are a group of people with Long Covid who have basically got Long Covid/ME/CFS and they could slip in to the ME service.
The ideal situation is, as we have actually got in Cornwall – because I was doing a programme on this only the other day down there in Truro – 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 and Joan McParland, thank you both very much. I am sure we’ll come back to this again, because as we were saying in the introduction it is a subject that we’ve spoken about on Evening Extra before, and we’ll keep an eye on things – we’ll keep in touch with Joan – to see how things progress. Thanks to Joan and to Dr Shepherd for their thoughts this evening.