Gary Burgess - 'My illness has shown journalism can be a force for good'

"
Journalism’s a funny old trade. It’s sometimes difficult to get a sense of what difference, if any at all, your reporting is having.

Indeed, in my experience, a lengthy and difficult investigation that uncovers a scandal or wrongdoing can illicit less feedback than a quirky ‘and finally’ story that took a matter of hours to film.

But that’s not to say those big stories don’t matter.

On that basis, I had no expectation of what would happen following my appearance on ITV News a fortnight ago to share my own piece of news. I’ve been off full-time work for more than a year now after falling ill with ME/CFS.

It’s a little-understood condition characterised by pain, fatigue, brain fog, and a disproportionate response to any form of exertion. In short, overdoing it can leave me bed, or house-bound. The difficult bit is learning a new way of living to stay the right side of my new reduced limits.

It’s a work-in-progress… but I’m getting better."

rest of article here:
https://www.itv.com/news/channel/2018-03-07/my-illness-has-shown-journalism-can-be-a-force-for-good/

 

Thanks for sharing here, @Sly Saint.

 

@Gary Burgess I get very concerned when I read 'getting better'.......as Trish said, so many of us don't get better, in fact most with ME as defined by ICC criteria do not recover. Some get worse. I am almost 2 years in, use a wheelchair, partially bedbound, cannot function as a mum to my kids. ME can be fatal. Are you aware of the case of Sophia Merza, who died from ME in the UK in 2005? Her story is harrowing. I think you are wonderful in all you are doing and a complete gentleman here on the forum. I feel bad criticizing but the whole 'getting better' angle is very dangerous for us. Of course, I hope you are improving etc..... However, If we can get better by ourselves, the take home message is ME ain't that serious and why would we need medical treatment for a disease if it can be resolved naturally?

 

Thanks @Sunshine3. I'd suggest you re-read my article.

The words 'getting better' followed a sentence about how I am learning new ways of living with my symptoms. And I am getting better at learning new ways of living with my symptoms.

 

Thanks Gary. I just had flashbacks to Martine McCutcheon. Appreciate the clarification.

 

Also... fingers crossed that Gary will genuinely recover. For people who've been ill less long, they do seem more likely to go on to just naturally recover, or gain real improvements over time (a the same time, many do not, so I don't want to encourage false hope). It must be difficult placing oneself in the limelight like this, and when talking about our personal experiences we will often have things which are unusual compared to other patients, or could lead to people misunderstanding what ME/CFS is like for most patients. These sorts of things are just a part of personal stories.

 

Thank you again, @Gary Burgess. You are doing such a fantastic job at transforming a crap circumstance into education, empowerment and awareness. Keep it comin'!

 

I think we all agree that language and words can be difficult, especially in a short text. That may be the case for most things, but given the history of ME, many words and sentences gets touchy. Not strange at all, because ME-patients are aware that words is not just words - it matters with direct and often devastating effect. Gary has clarified what he actually meant with the “getting better” part. And many thanks for your work.

And here follows a way to long comment.. Since the words “getting better” was read in several ways, let’s hypothetically relate them to the disease itself. This is important, cause I strongly believe that “new” patients must be very aware of what not to do. That can obviously reduce some suffering and improve prognosis. Many of us had no idea, we didn’t get sound advice, not a good combination. In hindsight - if we just knew then what we know today!

Prognosis of ME is not an easy read, but there are lessons to learn. If ME is fully developed and of some length, - getting (much) better/recovery is rare, often not the case. The reality of the essential number of today’s ME-patients, is at best stabilizing a very difficult situation, but many do progress negatively. That is the facts. It is hard thinking of patients that have endured decades of this extreme cruel disease. Now 13 years here. And god bless the very few of the above mentioned patient that fully recovers.

the same time - there is a whole lot to learn from the history - that can have huge impact. There is a fact that many ME-patients have come out extremely bad in the acute phase of the disease. It cannot be stressed enough how damaging this can be in the long run. The causes of this is simple: when needed, patients met no sound medical advice, often the opposite and directly damaging ones. And what do most people/patients do? They cope and manage best possible. The latter is important, but the “just go a long” (coming from a doctor) is also a major problem. Thousands, millions of experiences of this approach, know that this was completely wrong, making it absolutely bonkers in the short run, destroying a real chance of improving much in the long run. The pushing trough cycle in the early stages can and will often be the absolute tipping point.

So the message from “old” patients to Gary and other “new” patients and the patients of tomorrow, must be: learn from the grim history. Don’t underestimate the damage that can be done following the principle of “just go a long as best as you can”. The experiences and empirical data is overwhelming. What makes this difficult in the real world, is that most patients are to strong and good at doing just this, in that sense they’re own worst enemy when we surely know that you can’t push your way through ME and expect to restore health.

Unfortunately old ME patients didn’t learn anything important from doctors when needing advice at most. The effect is devastating. But times are changing. Let’s hope the pretty obvious, that new patients in near future will meet knowledge when seeking it by medical advisors. Until then - take notice from history. Take great care. Pacing is the striking factor that must be practiced with extreme cautiousness for a longer period in the early phase. That will be your best investment ever when coming to the chance of getting better/improving and restoring health in the long run.

 

Thank you for your fantastic advocacy work @Gary Burgess!

 

Welcome @Peter

 

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