SCOPE : Q&A about chronic fatigue or Myalgic Encephalomyelitis (ME/CFS) with Dr Charles Shepherd

https://twitter.com/user/status/1158641371995131910


this was a few days ago

questions and Dr Shepherds answers here
https://community.scope.org.uk/disc...phalomyelitis-me-cfs-with-dr-charles-shepherd

 

Too many references to increasing activity for my liking.

 

There are a hell of alot unusual cases then..

 

Had a look at the front page of SCOPE, where there's link to another article about ME, a guest blog from a young ME patient:
The impact of ME by Jenny Thisting

Hi, my name is Jenny and I’m 24 years old. I’ve had Myalgic Encephalomyelitis (M.E) for 5 years but have been experiencing chronic pain and fatigue caused by multiple health problems from the age of 16. One of my hobbies is writing my blog: This thing they called recovery. The aim is to help facilitate more open and honest conversation about life with chronic illness and how it affects our lives as well as our bodies.

 

The only reason for increasing activity is to do things you enjoy or that relieve the pain or boredom. Too many outside people act as if it is a moral duty. Society sees being fit and active as something to be applauded. My Granny tried to spend as much of her life resting as she could

It is not a universal good for everyone to be as active as possible.

They seem to forget that being less ill is the single most effective way to increase activity levels

 

THIS!

 

So hang on why does he keep talking about increasing activity levels? This is what doesn’t really help, when we getting this message wherever we look.

it’s only all of your wonderful advice on the S4ME forum that has helped me think about it from a different way.

Ok but again he’s talking about baselines and increasing activity..

Why can’t he just say “don’t do more than you can do, and rest a lot. Rest. All that you can. especially in the beginning and even after.” Instead or saying get monitoring from a doctor or OT or professional - since when do any of these doctors or OTs have any idea whatsoever of how to manage M.E, and infact will cause more harm?

And saying balancing rest and activity is what I’ve kept hearing over the past 4 years. It’s what made me confused and kept me pursuing all these avenues. In reality that means keep doing more than you can do and you end up even worse with severe M.E

why is there no proper advice or help for severe M.E.

 

No I think I should be though.

 

So perfectly said.

 

My view, as someone moderate for 25 years, is that it depends. If you are currently resting too much, you may benefit a bit (in the sense of getting a bit more enjoyment from life) by increasing what you are doing gradually until you find your current limits and stay within them. By the same token, if you are not resting enough you will need to cut back, if that's even possible.

But which category you are in depends on your individual circumstances and will probably change over time. The advice to increase activity may be good for some people but it isn't universal.

Due to the preponderance of so much crap research, no one knows the percentage of pwme for which the advice to increase is bad advice. It's probably high.

Edited to change 'not that high' to 'high'. Don't know how that came out wrong!

 

My interpretation is that when non-BPS doctors talk about baselines and increasing activity they mean this:

1/ Be as active as you can without triggering PEM/increasing symptoms.
That's appears to be their idea of a baseline. Which is fine as long as long as you realise it's a moving target which can go both up and down. And that for the very severe such a 'baseline' may not exist at all.

2/ The purpose of gradually and flexibility increasing activity is testing out your boundaries. Can I do this extra thing without PEM? If yes - keep doing it. If no - stop doing it. (This is different from GET where you keep increasing activity irrespective of symptoms with the aim of increasing, not just testing, your boundaries.)

I believe non-BPS doctors do understand that most patients with ME need to be advised to do less rather than more. What they don't seem to understand is that the vast majority of non-expert doctors and patients reading their advice will inevitably misinterpret it as patients should try to do more - simply because it's so deeply ingrained in us all that exercise is good for all and everything that the opposite is inconceivable (until you get ME...). They hear "be as active as possible" but do not hear - because it makes no sense to them - the next bit "without triggering an increase in symptoms".

So true!
I've had two lengthy almost-remissions (before another trigger sent me back to square one). Both times I spontaneously started feeling better, for no discernible reason, I didn't do anything to bring it about, it just happened. I started noticing some activities like having a rare shower suddenly didn't cause so much PEM. Then I instinctively started doing a little bit more and, when that didn't have any adverse effect, a little bit more again, and again, until I eventually hit a new ceiling. All that just came naturally. No CBT or GET required. I didn't train myself to become fitter (as GET would have you try), I explored how much fitter I had naturally become simply by being less ill.

In short: The (spontaneous) decrease in ME severity, and accompanying increase in available energy, came first. The (natural) increase in activity came second.

 

The problem is there is literally nothing I can do without triggering PEM - eating and going to the toilet triggers PEM, moving my legs in bed triggers PEM. And I think he should think about the perspective of the severe as well. Because Dr Charles Shepherd talks in general terms, and truthfully I do think a lot of us severe people are not getting the advice and/or help we need from many charities because of this.

 

this

 

In case anyone thinks I am being horrible at Dr Charles Shepherd, I’m not, I know he is trying to do a lot for people with M.E. but I think when talking about M.E, so often the people with severe M.E are forgotten about. I feel that way. And when it comes to severe M.E I think more specific advice needs to be given rather than general advice. looking at it from their specific perspective.

I feel like he also sometimes seems to be trying to balance both ends (the NHS approach as well as what PWME are saying) and in the process missing both. Like having a list of all the NHS ME/CFS clinics on the website and saying M.E association don’t agree with graded exercise but do agree with pacing. And then saying that we should get the help of a doctor/OT/physio to help with finding baseline/increasing activity. Have many of us found a doctor/OT/physio who will realistically do this in a safe or understanding way? This is the worry.

I know of someone who called the M.E association helpline and was just directed to the NHS CFS clinics as the treatment option.

I understand he’s kind of caught between a rock and a hard place but it’s a confusing (and edited to add, potentially harmful) message.

ETA the 25% charity which I’ve now joined has better fact sheets and info.

 

This