Cambridge Dad living with ME becomes so exhausted he can’t walk downstairs – with Dr Charles Shepherd

May 24, 2021


Mark started getting symptoms of ME when he was in his 30s, now in his 60s he wants to open up about his debilitating condition.

Dr Charles Shepherd talks about the new NICE guideline for ME/CFS, explains how the ME/CFS and Long Covid communities can help each other, and speaks of the difficulties people with ME/CFS still have obtaining priority Covid vaccination…

Cambridgeshire Live, by Ioanna Toufexi

Extracts:

Mark Harper

A brave dad from Cambridgeshire has opened up about his debilitating battle with Myalgic Encephalomyelitis also known as ME.

The debilitating condition shares a lot of symptoms with ‘long Covid': bringing the same overwhelming fatigue, brain fog, aches and pains, pulse and blood pressure disturbances.

But despite the life-changing effect it can have on people, ME sometimes referred to as Chronic Fatigue Syndrome, is still to be taken seriously by many doctors.

Mark Harper, 68, a retired physicist from Cambridgeshire, has shared his experience of living with the condition, which he has had since his 30s.

“I only shower once or twice per week because I can’t afford the energy. If I have a shower – that’s it. I can’t do anything else for the morning.”

“I can manage 3 or 4 hours a day upright, and the rest of the time I have to rest. And I am one of the less ill people with ME.”

Mark Harper

He explains that sometimes if he has something really important to do he can push through, but it will come back to bite him.

“If I do that, then I begin to get all the symptoms of gastric flu, he says. That is, extreme stomach pains, nausea, severe headache, fever, “I just get sicker and sicker and sicker.”

“If it gets to that stage, it’s gonna take three days to recover. It’s a bit like having a credit card with a 200% interest rate. I can borrow money against it, but then I have to pay twice as much money back.”

Mark Harper

Mark is Chair of the Cambridgeshire ME support group, where members keep in touch on Facebook, with Zoom calls, and, before the pandemic, face to face meetings – for those well enough to leave the house.

“One of the most difficult things about ME is the way you get treated by some parts of the medical services.”

“They just get told ‘come on, pull yourself together, stop being hysterical, you're not ill'.”

“That's still a response that unfortunately a lot of people get – and you have got to remember that these are extremely ill people who need help.”

Mark Harper

Upcoming NICE guidelines change the game

But this is going to change soon, says Dr Charles Shepherd, Honorary Medical Adviser to the ME Association.

“We now have a new NICE guideline, which is the official guideline on how you manage conditions, in the final stages of preparation,”

Dr Charles Shepherd
Dr Charles Shepherd

Dr Charles Shepherd has been part of the committee that produced the draft, which is now under public consultation, and expected to come in force around mid-August this year.

The guideline no longer recommends Graded Exercise Treatment, which is based on fixed incremental increases in physical activity. The prescription of GET for ME/CFS has been hugely controversial.

It instead highlights the importance of ensuring that people remain in their ‘energy envelope’ when undertaking activity of any kind.

It also emphasises that cognitive behavioural therapy (CBT) is not a treatment or cure for ME/CFS. However, it may be useful “as a supportive therapy” to improve wellbeing and quality of life.

Dr Charles Shepherd says that the new guideline has accepted that the psychological explanation “is discredited now and is no longer relevant.”

I express my worry to him that this will feed to the attitude that a ‘psychological', mental illness is not real, and a problem must be physical to be taken seriously. He quickly emphasises that this is not the case.

“Mental illness is just as horrible as physical illness,” he said. “We're not in any way trying to discourage or denigrate mental illness; people with mental illness are just as ill as people who have a physical illness.

“The point we're trying to make is that it is not helping people to say that they've got a psychiatric problem that can be treated with psychiatric interventions when there’s something physical going wrong in their immune systems.”

Dr Charles Shepherd

ME/CFS and long Covid are very similar conditions

“Most of the people who have Long Covid have also got problems from organ damage relating to the actual Covid infection of the time,” explains Dr Shepherd.

“A lot of them have got heart, lung damage so in addition to their ME/CFS type symptoms they've also got breathlessness, chest pains loss of taste and smell, fevers, these sort of things.”

Still, both communities can reap benefits from the overlap between the two illnesses.

On one hand, Dr Shepherd says that the ME/CFS community has a lot of help to offer to people with long Covid, because “we’ve got an awful lot of experience of dealing with these post-viral symptoms.”

On the other hand, “because it has become such a major issue of concern that there are so many people who got long Covid now, the Government are pouring huge amounts of money into both research into long Covid and setting up all these long Covid clinics. And this research should have some benefit for people with ME/CFS, too.”

Vaccination priority struggles

As if all this was not enough, around half of the people with ME/CFS have had trouble convincing their doctor that they should be prioritised for Covid-19 vaccinations – just because it is not mentioned explicitly in the non-exhaustive list of illnesses by the JCVI.

This is why a member of the Cambridge ME support group has been running a petition to specify ME/CFS on the list of neurological conditions under group 6.

While a large portion of the adult population has now had their first jab, this fight is still relevant: younger people are still waiting, and there's talk of booster jabs in the autumn for at-risk groups.

The ME Association has provided free advice and template letters for those who are refused priority vaccination. And if all else fails, write to your MP, says Dr Shepherd.

“One thing that people can do if they've hit a brick wall with their GP is to write to their MP,” he advises. “We know that some MPs have been extremely helpful on this and in banging heads together – and once an MP intervenes it can have an effect.”

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