A Life Hidden - Blog posts by Naomi Whittingham

Thank you @Trish. Do you think they would willingly circulate something so critical of their own publication?

 

There seems to be a belief that GET helps some and therefore is relevant.
I think diagnosis is a huge issue.

 

How about “doing a Dave Tuller” by writing a public message to the organisation @Naomi10 ?

Perhaps on the basis that your many readers have suggested that all U.K. professionals should have information like this from the very people (like yourself) who are the “Experts by Experience”.

(Happy for you to put the blame on us!)

 

BACME is a lobby group.

 

This is just conjecture on my part and nothing more. I suspect that once the truth is finally unravelled about what ME is and is not, it may turn out that some people will not in fact be harmed by gently progressive exercise, even though many others can be. If so, and if people could be safely tested beforehand to know which group they were in, then harm could be avoided to those at risk of it.

But we are nowhere near that point yet, if it even exists at all. But these people operate as if they have some divine insight, divine right. Or maybe they are just b****y stupid.

Too confident in their own cleverness.

 

@Naomi10 thanks for 'taking up the challenge on this'. I was a bit worried about asking you but am very glad that you have done it.

 

@Sly Saint, I’m really glad you drew my attention to it. My online time is very limited and I miss a lot of things. The guidelines had passed me by, but as soon as I read them I felt I wanted to write about them.

 

Excellent. You have a way of getting beneath the gloss.

 

From workwell , ( and myhill) it is the type of exercise when someone is mild. GET is simply the completely wrong approach.

 

I think a distinction needs to be made between exercise and graded exercise. In some cases, gentle exercise can be of benefit provided it is within the person’s safe limits. The very nature of graded exercise, however, is that those safe limits are constantly challenged and any warning symptoms ignored. For anyone with ME, such an approach will be detrimental.

 

The evidence is clear now, that people with ME have a defect in their aerobic respiration system which means that their anaerobic threshold is much lower than normal and which drops even lower after exercise. The onus is on the people who believe exercise is the treatment for ME to explain why they do not believe this evidence.

If some patients can improve on gentle or graded exercise it can only mean one of two things - they do not have ME which is always possible because of misdiagnosis and because CFS is used for simple idiopathic fatigue without characteristic ME symptoms or the exercise is being done by people who have an aerobic system which is still quite efficient even if damaged.

They must explain how they can determine who can be given exercise without the risk of permanent harm, and more importantly, what precautions they take to know who can be assured they are not at risk of permanent harm.

Anyone who simply ignores the evidence is not acting scientifically and is working against patient interests. At the very least we deserve strong repeatable trials which show there is no harm from this treatment as is taken for granted before anyone is given a drug.

If they want us to believe them against all our experience they must prove it to us and explain why we are wrong.

 

Yes. And if the latter, the exercise may still be inflicting invisible damage that will likely become visible only once it is too late to turn back.

 

A very important point. Until we know more about the mechanism and can measure what is going on underneath, there is no way that pushing exercise beyond what feels comfortable should be a treatment.

There is historical precedent. Radiation was a miracle treatment for everything until they realised it was causing cancer years later.

 

It is akin to so many natural processes, including things like climate change, which itself is a highly complex set of interactions between many deeply nested subsystems, each with its own delays and nonlinearities (and thereby impossible to theoretically predict no matter how clever some may think they are). By the time symptoms have become severe enough to convince the doubters that interventions really are causing a problem, it can be way way too late, because the the effects are still rolling through the system from interventions being made in the past. The tipping point into harm may not yet be evident at the output, but may already be committed to and irreversible due to inputs already applied.

The human body is itself a highly complex set of interactions between (I'm pretty sure) deeply nested subsystems. A difference is there are more biomarkers for climate change than there are for ME. I see GET-harm deniers akin to climate change deniers.

It's a fundamental of all higher order systems (which are all around us) ... effects appear at system outputs well after stimuli were applied to system inputs. Once applied you can sit and do nothing, and the effects will subsequently appear at the outputs. But in these sort of cases because people see nothing changing at the outputs, they think it's safe to just keep on applying stuff to the inputs. One of the effects can, at some point, constitute irrevocable harm.

You cannot change intervention history, be it GET applied to an individual, or climate change of a whole planet. The system complexities are considerable, and outcomes extremely undeterministic for both.

 

Part 3

Beneath the Surface, Part 3

By Naomi Whittingham

https://alifehidden.com/2019/10/28/beneath-surface-3/

The third and final part of a series analysing the British Association of CFS/ME (BACME) guidelines on severe ME. I have chosen to write extensively on this subject, as the guidelines encompass several themes that are important to me.

The BACME guidelines support the biopsychosocial (BPS) model of ME, which holds that deconditioning and the avoidance of activity play a major part in ongoing symptoms. In Part 1 and Part 2 I outlined my concerns about the guidelines, particularly their recommendation of graded exercise therapy (GET), also known as graded activity, and their failure to address many issues of critical importance in severe ME.

Today I ask whether deconditioning is relevant in the management of severe ME, and, if so, how it should be addressed.

I end by offering suggestions of ways in which the guidelines could be improved...

 

Thanks for sharing @Eagles.

Once again, each section contains a summary at the end, for those unable to read the full text.

Please note that it is not necessary to have read the previous parts before reading this one.

Some quotes from Part 3:

“Speaking from a personal perspective, I have been aware of the effects of deconditioning in my own illness. But having progressed from being close to death to the more active place where I am now, I can confidently say that deconditioning and the symptoms of severe ME are very, very different entities.”

“Trying to create healing through sensory exposure - or any form of activity - is absurd at best, and dangerous at worst. It is akin to believing that because healing a broken leg allows a return to playing sport, a return to playing sport must therefore heal a broken leg.”

“Professionals properly trained in treating severe ME would make an immeasurable difference to the lives of many. BACME have missed a vital opportunity to support this.”

 

Great writing Naomi, thank you for spending precious energy on this.