Xmas Appeal: ‘Orchestras, Elephants, Jigsaw puzzles and Mountains!’ An interview with Dr Charles Shepherd | 23 November 2018

November 23, 2018


Helen Hyland, Fundraising Manager, ME Association.

In this interview, Dr Shepherd explains why M.E. research is so important, and why he is asking for your support for the Ramsay Research Fund Christmas Appeal.

Helen writes:

Dr Charles Shepherd, 2018 BBC Newsbeat.

Keeping up with Dr Charles Shepherd when he is in full flow is almost impossible. His enthusiasm about research into M.E. is infectious.

He knows so much, he’s involved in so many different areas, and he’s so eager to tell you all about it. All at the same time.

He’s like a fountain bubbling over with knowledge. And you never quite know where your conversation will take you.

Dr Shepherd is the ME Association’s medical adviser, trustee and spokesman. He is a passionate advocate for and about all things to do with this devastating disease.

He works relentlessly – and on a voluntary basis – lecturing, being interviewed by the media, providing medical and research information, campaigning, networking, and leading vital research via the MEA Ramsay Research Fund.

Our conversation about M.E. research (and the need for more of it) took us from an orchestra, via elephants, to jigsaws and mountains.

From which you’ll understand that research into M.E. (myalgic encephalopathy/encephalomyelitis) is no easy subject to grasp and why this piece should perhaps be subtitled “M.E. Research for Dummies” – and I freely admit I’m the dummy!

Download the full interview
Dr Shepherd explains the research we are funding, and what we know about M.E.

So, what did I learn?

  • Biomedical research has come a long way although it might not seem like it at times.
  • Dr Shepherd is confident we are moving in the right direction, especially now that the UK ME/CFS Biobank is open for business and stimulating new research at home and abroad.
  • We still have a long way to go and quick fixes are unlikely. Sadly.
  • More funding will mean more projects, more knowledge, and a clearer understanding of what is triggering and perpetuating M.E. Hence Dr Shepherd’s personal plea for your support for the MEA Ramsay Research Fund Christmas Appeal.

I asked what research has taught us so far. Dr Shepherd used the “3P’s” to explain distinct stages of how M.E. might develop: predisposition, precipitation and perpetuation.

He said that there is a growing body of evidence that suggests people in some families are predisposed to getting M.E. because of their genetic makeup. And whilst many cases of M.E. are precipitated (or triggered) by an event – usually a viral infection (but also trauma, vaccination, or exposure to toxins), undue physical or mental stress at the time can also play a part in some instances.

An orchestra?

M.E. is an illness that is perpetuated by the interaction of a number of components that include:

  • ongoing activation or dysfunction of the immune system;
  • problems with muscle and mitochondria;
  • chemical abnormalities at the cellular level (metabolites and enzymes);
  • disturbances in the neuro-endocrine (hormone) system,
  • brain abnormalities (the autonomic nervous system, hypothalamic dysfunction (the ‘brain thermostat’ that controls temperature regulation, appetite and sleep patterns) and activation of microglia with low level inflammation).

It is this perpetuation that makes M.E. “the last medical enigma of the 21st century”. It is an illness that affects many interrelated parts of the body; something that happens in one place, will affect other parts as well.

The 2018 RCGP conference.

Dr Shepherd likened the body to an orchestra: all the different systems (i.e. brain, heart, gut, immune system) have a part to play and, with M.E., if something isn’t quite right in one system, then this will affect other systems if not the whole body too.

M.E. research has brought us great advances in knowledge, but we still are some way from piecing together the jigsaw to see the complete picture. To do that, more research is needed. There’s no escaping this hard fact…

You can’t just produce one positive test result, you need to retest and then test again… Only once independent research has produced the same robust and consistent results, can we all move forward to the next stage…

Research and clinical trials

The MEA Ramsay Research Fund has invested over £1million in M.E. research and still has a key part to play; supporting projects that confirm hypotheses or advancing new ideas.

Dr Shepherd specifically asked that I explain here just how closely he works with the other trustees at the ME Association, and other medical and research experts, to encourage and promote new research that advances our understanding.

The more work that is done at this level, the greater our overall knowledge and understanding, and the sooner we shall be able to see that big picture. That is why we are asking for your support for our Ramsay Research Fund Christmas Appeal – so that we can fund more projects than ever before in 2019!

Clinicians wanted!

But we won’t just need funding. We also need to find clinicians who are:

  • willing and able to take on the job of diagnosing and managing people with M.E.
  • who agree that M.E. is a physical illness.
  • who are based in hospitals where there are clinical trial units.
  • like the wonderful and sadly recently retired, clinical immunologist Dr Amolak Bansal, who have all the resources of an NHS teaching hospital behind them.

Clinical trials take time to perform. “We’re probably talking about 5 years at least” from start to finish for a clinical trial of just one drug, Dr Shepherd told me.

And there are so many drugs out there that could be tried, once we have an accurate picture of which bits of the body are likely to be most responsive to drug treatment.

That’s why we have a duty to undertake our research beforehand – as thoroughly and as comprehensively as we can. Because there is little point in wasting valuable time, money and resources or in raising the hopes and expectations of M.E. sufferers unnecessarily.

How you can help us to move forward.

I’ll leave Dr Shepherd to have the last word…

“Until we have a better understanding of the complex underlying disease mechanisms in M.E., we cannot move forward.

“The Ramsay Research Fund is closely working with three centres of excellence – at Newcastle, London and Oxford – to further that understanding.

“We are also working hard to get new experts into the field. The more research that we can do, the closer we will get to the answers that we are all searching for.

“I know that this is an expensive time for so many reasons, but please give anything you can spare to support the Ramsay Research fund Christmas Appeal.

“One day we will understand M.E. and because of your help, that day will arrive that much sooner.

“Thank you.

Download the full interview
Dr Shepherd explains the research we are funding, and what we know about M.E.

The MEA Ramsay Research Fund Christmas Appeal

If you would like to support our Christmas Appeal, then please:

  • Donate online via our JustGiving page,
  • Donate by card over the phone to head office (01280 818964).
  • Donate by cheque payable to The ME Association (with a note saying that it is for the Christmas Appeal) to ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Buckinghamshire, MK18 4DF.

For more information please visit our Christmas Appeal webpage. And if you have any questions get in touch with Helen Hyland or Head Office.

From us all at the ME Association, we hope you enjoy a safe and comfortable Christmas and more hopeful New Year. Thank you.

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