New ME/CFS video from Euromene

March 9, 2022


Euromene has produced 11 videos, which will shortly be available on their website however it is currently down for maintenance. In the meantime we have kind permission to share ‘Live with ME' that features Dr Charles Shepherd.

EUROMENE stands for European ME Network, also called European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It was started by the Cooperation in Science and Technology (COST) Association, an international not-for-profit organization in 2016.

Transcript  

I'm Charles Shepherd. I'm a doctor with 40 years personal and professional experience of dealing with ME and what I'd like to talk about briefly is this illness from the patient's perspective. So, I'm going to bear on my own personal experiences and also the fact that I've been medical adviser to the UK based ME Association for probably about 25 years, where we support and inform people with ME and we do the same for health professionals. 

In my own case, I was like many other people with this illness. I was a very fit young adult in my late 20s and I never had any health problems at all. I caught a very nasty dose of chickenpox and from that point on, once the chickenpox had disappeared, I was left with all the classic symptoms of ME. So, I had crushing debilitating activity-induced fatigue, cognitive dysfunction (brain fog), the orthostatic intolerance, problems with standing up. I also had some of the more slightly more unusual features of ME, in that my temperature control was very poor and I also had, which I think is a very diagnostic feature of this illness I had a complete intolerance to alcohol. 

So, I think we have two basic problems from the medical point of view of dealing with this illness and that is late diagnosis, misdiagnosis and then people not being given any form of management or even bad management advice, especially in the very early stages. And I think that had a very important adverse effect on long term prognosis and the patient point of view, I think there are a number of key issues which really do need to be addressed. 

First of all, we need proper recognition from the medical establishment, from doctors that this is a very complex, multisystem disease that there is a wide spectrum of severity and a wide spectrum of prognosis that happens to people with this condition. So, at the one end of the spectrum, we do have people who are making some degree of progress, but at the other end of the spectrum, and this is often are just totally ignored by the medical profession. We have round about 25% of people with me who are severely affected their housebound wheelchair bound or even bed bound and possibly even tube fed at the very severe end of the spectrum. 

People want doctors to be able to be making an early and accurate diagnosis. I mean here in the UK the guidelines from both NICE (National Institute for health and Care Excellence) and from the Chief Medical Officer indicate that we should be making in most cases where this is straightforward, a diagnosis and an accurate diagnosis within about three months of the onset of symptoms. 

This is just not happening and we still know that here in the UK, probably over half of people are still not getting a diagnosis from their doctors within a year, and that is completely unacceptable and this follows on into the process of management because if a diagnosis is not being made, then people are not getting help with management. 

A crucial call from the patient community is that they need help with, above all, I think activity management. That's activity and energy management in relation to both physical and mental activities, because unless people get that right and get the right help right early on, they're not going to make any progress at all. 

They need help with their symptoms, which they're often not getting. In particular things like pain and sleep disturbance. There's no magic treatment. There are drug interventions that can help some people who are having big difficulties with pain, sleep disturbance and then the more complex things like the orthostatic intolerance (OI) and PoTS (Postural Orthostatic Tachycardia Syndrome) and these sort of autonomic nervous system disturbances that often go with this illness.  

But above all they need doctors that are going to understand, believe them and have empathy with the fact this is an illness, a devastating illness that is just having so much impact on every aspect of their lives, they're not only suffering from really very debilitating ill health and disability, it's affecting all aspects of their life. As I know from personal experience it is affecting family life. I've been extremely lucky and having a wife and family who supported me through all this, but many people don't have that. 

It affects people's ability to work, to go to school, most people with this illness are not able to work. They're not able to carry on with their education, probably puts a stop to almost all aspects of their social life.  

Please listen to people with ME. Please address these concerns and let's try and move forward and make some progress with the way in which health professionals, social care professionals deal and help people who have this awful illness.  

Thank you. 

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