IT SEEPS THROUGH MY WHOLE BODY

I was invited to attend the launch meeting of The MS Society Clinical Trials Network, to think about the kinds of research they want to fund. The Network is a gathering together of researchers interested in Multiple Sclerosis. It was formed to look at the ten research priorities, important to people with MS, which the Society put together following consultation with its members.

This first meeting focused on three of them –

1. Which treatments are effective for Fatigue in people with MS?
2. Does early treatment with aggressive Disease Modifying Drugs improve the prognosis for people with MS?
3. Is Vitamin D Supplementation an effective Disease Modifying treatment for MS?

Within the day there were workshops to discuss each and, as someone with MS, I was invited to attend the Fatigue one.

 

Fatigue is one of the most common and debilitating symptoms of MS. It is also invisible. It’s difficult to describe and is not like the exhaustion you feel after running a marathon. That is what I call justified exhaustion. Fatigue is unjustified. I resent it. I haven’t done anything to justify or explain why I am so tired.

 

The researchers were interested in my experience of fatigue and how it differs from being tired and I very much felt part of the discussion.

 

IT SEEPS THROUGH MY WHOLE BODY

 

EVERY BONE AND EVERY MUSCLE

 

OVERWHELMING AND TOTAL

 

THERE IS NO ESCAPE

 

 

The words are from a poem I wrote. Or think of severe jet-lag without necessarily being sleepy, combined with the sheer weight of depression without necessarily the low mood.

  

If defining fatigue is difficult, measuring it is even more so. I think of it a bit like pain in that respect – it is what the patient says it is. Here do you start?

 

We looked at some of the research that has already been done, much of it with Chronic Fatigue Syndrome. There is much to be learned from research in other areas. Cognitive Behaviour Therapy (CBT), in its various forms, has also been explored in terms of managing fatigue, with some positive results. There was lively discussion that could have gone on for far longer than we had time for.

 

I look forward to the next meeting and taking it further forward. Watch this space.