BBC Radio Kent – Interview with Dr Charles Shepherd about the new NICE guideline for ME/CFS

November 1, 2021

Listen to the full interview on our Youtube channel and/or read the transcript below:

BBC Radio Kent – Interview with Dr Charles Shepherd (Honorary Medical Adviser to the ME Association) Transcript 1st November 2021.

Dr.Shepherd, MEA Hon Medical Adviser
Dr Charles Shepherd

00:00:07 Matt Davidson (Presenter) 

Before that, though, a health watchdog has scrapped a previous recommendation of graded exercise therapy (GET) for ME, the National Institute of Health and Care Excellence, or NICE, has published a long awaited and contentious final update to guidance on treatment. 
00:00:21 Matt Davidson (Presenter) 

Many patients with ME or chronic fatigue syndrome (CFS) say the therapy which encourages patients to slowly increase their levels of activity makes their condition worse. 

00:00:31 Matt Davidson (Presenter) 

The advice was due out in August. It's now November. Let's hear now from Doctor Charles Shepherd, he's from ME Association. Doctor Shepherd, first of all, for those who aren't sure what is ME

00:00:40 Dr Shepherd, Honorary Medical Adviser to the ME Association 

Morning Matt, yeah. So, first of all, ME stands for Myalgic Encephalomyelitis. That's the long medical term for it and ‘myalgic’ means affecting the muscles and ‘encephalo’ means affecting the brain and ‘itis' means inflammation or infection and this condition has lots of overlaps with people who are suffering from long Covid at the moment, which is another serious post viral illness. The history that most people give with ME is that they're perfectly fit young adults, it also affects children and 

00:01:19 Dr Shepherd, Honorary Medical Adviser to the ME Association 

adolescents, they get a viral infection, they don't recover from that, just like people with long Covid, they continue to feel unwell, flu like and that they have a cluster of very characteristic symptoms. So they have this fatigue and it's really debilitating fatigue. 

00:01:36 Dr Shepherd, Honorary Medical Adviser to the ME Association 

It's activity induced, so it's rather like running on a flat battery. You can do so much, and then you just have to stop what you're doing. It's not a tired all the time fatigue and if people do more than they can cope with within their energy limit limitations, they get something called post exertional malaise (PEM) or post exertional symptom exacerbation. So, the following day they will feel worse as a result of doing too much today they have this brain fog, this cognitive. 

00:02:06 Dr Shepherd, Honorary Medical Adviser to the ME Association 

dysfunction problems with short term memory concentration, attention span again, which occurs in people with long Covid. Their sleep is totally unrefreshing they may get a total full night's sleep and they just wake up feeling unrefreshed the next morning and they have problems again, very characteristic symptom, which again occurs in long Covid. 

00:02:28 Dr Shepherd, Honorary Medical Adviser to the ME Association 

Their pulse and blood pressure regulation is not being controlled properly from the control centres in the brain, so they have difficulty with standing that's called orthostatic intolerance (OI) and they may feel faint on standing. They have a lot of other symptoms as well, but those are the very characteristic symptoms of ME also called in its very early stages post viral fatigue syndrome. 

00:02:52 Matt Davidson (Presenter) 

And it's interesting that you make the comparison or you at least you were alerted to the similarities with long Covid which sadly a lot of our listeners where to identify with. Because I get the impression that ME is something which is very little is understood by those who don't have it. In fact, sometimes people say quite nasty things to ME sufferers, don't they? 

00:03:12 Dr Shepherd, Honorary Medical Adviser to the ME Association 

Um they do and I think This is why this new NICE guideline is being so welcomed by the ME patient community.  I better say that I've got two hats on here I'm a medical adviser to the ME Association, which is the national charity for people with ME. But I've also been a member of the committee which has produced this new NICE guideline. 

00:03:34 Dr Shepherd, Honorary Medical Adviser to the ME Association 

I think if I quickly run through the key points in this guideline that we are saying to the whole community, listen, especially the medical community, listen to these patients, believe them. They've got a serious complex medical disease going on. We want people to get diagnosed early and accurately, preferably within three months. Again, like long Covid within the onset of symptoms following this viral infection. Uhm, we're providing in this guideline very sensible and detailed, advice, guidance on management, particularly activity and energy management. 

00:04:08 Dr Shepherd, Honorary Medical Adviser to the ME Association 

The new guideline as you picked off to start with, is now scrapping a previous recommendation that everyone should have graded exercise therapy (GET), which is really a form of exercise therapy which is structured, which is inflexible which involves incremental increases in activity and is basically based on the idea that this illness is all deconditioning, which is not true, so that has gone. 

00:04:37 Dr Shepherd, Honorary Medical Adviser to the ME Association 

Sensible advice on activity management based on something called pacing is in there now, and we've also put a lot of emphasis on the problems that children and adolescents have with this illness, particularly in relation to our education where it's the commonest cause of long term sickness absence from school. And the issues faced by people who are severely affected by this illness, probably about 25% and many people just don't realise that we have a group of people who are housebound, bedbound at the very severe end, they may have to be tube fed with this illness, so hopefully, we're dispelling a lot of myths about this illness. Emphasising that it's a serious and complex medical disease and it really does need to be taken seriously by the medical profession. 

00:05:26 Matt Davidson (presenter) 

Yes, so if the watchdog scrapped a previous recommendation of graded exercise therapy (GET) for ME, what's sort of put in its place, because presumably it would need to be some sort of exercise, would it? 

00:05:40 Dr Shepherd, Honorary Medical Adviser to the ME Association 

Well, I think well exercise is not the right term here, because exercise makes these patients worse. So that they need what we call in the guideline activity and energy management and this is accepting that it’s got to be very individualised this is because it's going to depend on the stage of the illness, the severity of the illness and to what extent people symptoms are fluctuating. So very early on, we'd be advising a period of rest up and then following that providing people are making some degree of improvement and just bringing in, again, just like with long Covid little chunks of physical activity, period of rest or relaxation, a chunk of mental activity and then some rest and relax. 

00:06:26 Dr Shepherd, Honorary Medical Adviser to the ME Association 

Then if things are going OK gradually but within people energy limitations on a day by day basis, gradually increasing what people can do.  It's not banning exercise, let me make this perfectly clear for people who are improving getting better, then you know you can bring in some form of exercise whether it's walking, swimming, you know in a warm pool, something like that. When people are improving, but exercise therapy per se, which is rigid, inflexible, based on the idea that you should just gradually say go for 200 metre walk every day for day for week one.  

00:07:13 Dr Shepherd, Honorary Medical Adviser to the ME Association 

Then add up that to 300 metres. Day 2 et cetera, et cetera. That just doesn't work, and we know from a great deal of patient evidence on this that round, about 50 to 60% of people are actually made worse by this very inflexible form of exercise therapy. 

00:07:28 Matt Davidson (Presenter) 

I see. Yeah, can you ever fully recover from me or will it always be in your system? 

00:07:36 Dr Shepherd, Honorary Medical Adviser to the ME Association 

Well, the prognosis is often quite uncertain. A lot of people do make some degree of improvement. Uh, it's quite often over a long period of time, it's very much up and down, but for people who've who have got something which we would describe as ME as opposed to just a post viral fatigue since syndrome and the prognosis is, is not terribly good to be perfectly honest at the moment, because we don't have a treatment for this disease. 

00:08:07 Dr Shepherd, Honorary Medical Adviser to the ME Association 

While there are some people who fully recover, get back to the full normal health. I mean, one person notable person, here that probably people have heard of it in the public domain, so I'm not betraying any medical conference, is Yvette Cooper the Labour MP. So, some people do recover and it’s a lot more likely in children and adolescents but I think for most people a realistic outlook is one of one of some degree of improvement, patchy improvement up and down improvement over a period, quite a long period of time. 

00:08:45 Matt Davidson (Presenter) 

OK. Are employers sympathetic enough to those with ME? Because I would you say I would imagine I'm, well I’m aware people, would need long, long time off work and they would need sympathy from those people they worked for, won’t they? 

00:09:01 Dr Shepherd, Honorary Medical Adviser to the ME Association 

Yep, I mean, the situation with employers, again, big parallels here with people long Covid who were trying to get back to work but can't go back to full time work. ME is covered by the 2010 Equality Act as a disability in relation to work, so people who've got this illness. 

00:09:19 Matt Davidson (presenter) 


00:09:21 Dr Shepherd, Honorary Medical Adviser to the ME Association 

Should be able to go to their employer and make have modifications to hours duties etc accepted as part of a return to work plan for those who were able to do so. Uhm, from our experience, some employers are extremely helpful in this respect, others are extremely unhelpful in this respect. 

00:09:44 Matt Davidson (Presenter) 

Right? Yes, I can understand that. Yeah, what would you like to see to going forward for people with their ME? 

00:09:49 Matt Davidson (Presenter) 

I mean it's so if the graded exercise therapy (GET) is, you know being replaced by something which is as doctors are more on the activity route rather than exercise, are there further sort of plans and treatments and therapies which are being worked on regularly? 

00:10:04 Dr Shepherd, Honorary Medical Adviser to the ME Association 

Yeah, well, I mean everyone who's got a disease wants more research putting into it, but our funding for research into this condition has been pitiful over the years. 

00:10:17 Dr Shepherd, Honorary Medical Adviser to the ME Association 

It is not surprising that some people with ME now feeling rather cross with the way that masses of money is now being ploughed into research and services for people with long Covid, now that it's been recognised. So, we do need more research into what the underlying problems are in this condition, and we know again, parallel with long Covid that there's a problem with what we call muscle energy metabolism, the way the body creates energy at a cellular level.  
00:10:51 Dr Shepherd, Honorary Medical Adviser to the ME Association 

So, we want research into drug treatments which are actually aimed at the muscle, immune system and neurological abnormalities that occur in this disease, and it's very interesting 'cause just before I came to do this programme I noticed that there is on the reporting from Oxford. There is a clinical trial in Oxford about to start on patients using patients with long Covid with a drug from America, which is designed to improve energy production within what are called the mitochondria, these are the parts of the muscle cell where energy is produced and it seems that this mitochondrial dysfunction that we've got in me may well be occurring in long COVID. So, there could be feedback here, important feedback from research into treatments for long Covid that could actually be applying to people with ME. 

00:11:34 Matt Davidson (Presenter) 
I was going to say I mean from the way we're describing it, and I'm the only reason I didn't answer earlier on is that I worried it would sound like a sort of an offensive question, but I'll ask it anyway. Now it is there something perhaps suggests that long Covid is ME? 

00:11:56 Dr Shepherd, Honorary Medical Adviser to the ME Association 

Well, there's a lot of clinical and pathological overlaps between the two conditions, and I think our view is, I mean, we've been following this since the start of long Covid and we've been producing information on the overlaps between Long Covid and ME/CFS. I think the simple answer here, is that there are people a lot of people with long COVID who have an ME component to it. So, they've got this debilitating fatigue, this orthostatic intolerance, the cognitive dysfunction that goes with ME and I think that's part of the post viral condition in long Covid for many people. 

00:12:29 Dr Shepherd, Honorary Medical Adviser to the ME Association 

But there are clearly other people long Covid who've got organ damage affecting the heart, the lungs, liver, the kidney from the Covid infection, which if you like goes into a separate box, that's not an ME/CFS type component.  

00:12:48 Matt Davidson (Presenter) 

Right, but similarities. 

00:12:54 Dr Shepherd, Honorary Medical Adviser to the ME Association 

So, people with long Covid, I think got a basically a long COVID ME/CFS, whereas others have got long Covid which is primarily affecting heart and lung and is a different situation altogether. 

00:13:00 Matt Davidson (Presenter) 

Yeah, no then the other thing with that is that nobody had Covid long enough ago to know how long it lasts. 

00:13:07 Dr Shepherd, Honorary Medical Adviser to the ME Association 

We don't know what the overall prognosis for long Covid is, but it's interesting in some parts of the UK and we've got a situation where long Covid and ME/CFS clinics are being set up for, you know, both groups together because of this overlap. 

00:13:25 Matt Davidson (Presenter) 

Yes, and did somebody with ME, do they really, really need to avoid COVID? Would it make them worse? 

00:13:30 Dr Shepherd, Honorary Medical Adviser to the ME Association 

Yes, all our experience is, that it is not surprising, 'cause any viral infection is likely to cause an exacerbation or relapse of ME/CFS symptoms and we know that from quite a lot of people who've had Covid on top of their ME it has produced a very significant relapse of their ME. So, we are encouraging people with ME to have a Covid booster, if they can manage to get one. 

00:14:00 Matt Davidson (Presenter) 

Yes, are they eligible for that? Do they get to the rightful place in the queue? 

00:14:06 Dr Shepherd, Honorary Medical Adviser to the ME Association 

We've had a long battle, but at the end of the day, we managed to come. I think persuade most, not all doctors that people with ME should fit into what was called JCVI group 6 for vulnerable people to have a Covid jab. There is one caveat to that, in that the vaccinations can exacerbate ME symptoms, so it is a bit of a double edged sword, so some people with the COVID vaccine are experiencing an exacerbation and sometimes a significant exacerbation of their ME symptoms, so it can be a difficult one to come to come to conclusion. 

00:14:23 Dr Shepherd, Honorary Medical Adviser to the ME Association 

Right, but that's rare, though, is it?  
00:14:51 Dr Shepherd, Honorary Medical Adviser to the ME Association 

Yeah, it is that rare though the and the side effect of the vaccine for ME. Well, uh, an exacerbation of their existing symptoms is not uncommon, but a rather more severe exacerbation of symptoms is more unusual, but it is occurring from our reports, so it;s you know it’s not a straightforward decision. 

00:15:06 Matt Davidson (Presenter) 

Right, so it's the recommendation those with ME should continue to get vaccinated. 

00:15:12 Dr Shepherd, Honorary Medical Adviser to the ME Association 

Well, on a personal basis. I have this disease how I got into it. I’ve had my Covid boosters. I haven't had Covid boosters I had my two doses of Covid jabs and I was OK. Um, you know I think the chances of catching a life threatening infection outweigh that, for most people the possibility of an exacerbation of underlying symptoms. 

00:15:35 Matt Davidson (Presenter) 

I see so. So yes yeah, from your point of view, then you know you've taken it and you were OK. 

00:15:41 Matt Davidson (Presenter) 

So that's yes, let's see. OK, alright Charles, thanks so much for coming on the programme today I've learned an awful lot in the last 15 minutes or so. So, thanks so much for indeed for explaining that's Doctor Charles Shepherd from the ME Association. We drifted off a little bit towards Covid and long Covid it, but I thought it's important. 

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