ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

[Large Donner]

He also needs to define pacing.

 

[Jonathan Edwards]

'Exercise is a powerful intervention. Get the dose right, it can help some people. Get it wrong, it can cause harm. Which is why it is graded'

So apparently it does cause harm. But how does he know if no studies have shown that? Anyhow does he know what at the right dose is if nobody has studied 'dose' of exercise, as they should have done. This seems like condescending blather I am afraid. If Dr Hammond wants to be taken seriously by PWME I think he needs to be a bit more evidence based.

 

[Large Donner]

Dr Phil Hammond

✔@drphilhammond
No she thinks it's a biological illness, with biological causes,

She does not thinks its a biological illness she stated quite clearly this week on radio 4 that she doesn't think there should be a distinction between biological and psychological. When she says its biological or "a very physical illness", she is clearly implying that just the symptoms are physical but the cause is psycho social.

but like all biological illnesses psychosocial factors can make it worse

Actually its psychosocial doctors who make it worse.

 

[A.B.]

Anyhow does he know what at the right dose is if nobody has studied 'dose' of exercise, as they should have done.

Have you seen this study? It's unbelievable. I'm getting surreal feelings again.

A randomized controlled graded exercise trial for chronic fatigue syndrome: outcomes and mechanisms of change.

The aim of this study was to investigate the potential mechanisms underlying the efficacy of graded exercise therapy for chronic fatigue syndrome (CFS). Forty-nine CFS patients were randomized to a 12-week graded exercise programme or to standard medical care. At the end of treatment the exercise group rated themselves as significantly more improved and less fatigued than the control group. A decrease in symptom focusing rather than an increase in fitness mediated the treatment effect. Graded exercise appears to be an effective treatment for CFS and it operates in part by reducing the degree to which patients focus on their symptoms.

However, the physiological data need to be treated with caution, as complete data were only available for just over half of the sample. This was due to the fact that ten patients refused to have a second test as they believed the initial test was harmful to them, five failed to continue until they perceived themselves to have reached maximal effort, making their data invalid and the data from two patients could not be used due to equipment failure.

With 25 and 24 in the exercise and control groups this is a high number. I wonder about the imputation.

The fact that heart rate increased in the exercise group suggests that the change in heart rate was a psychological rather than a physiological response.

Alternative explanation: exercise harms patients.

With regards to the physiological data, the lack of an increase in aerobic fitness following exercise therapy was unexpected. A similar training programme in CFS patients did manage to show an improvement in fitness (Fulcher & White, 1997). However, three things may help to explain this discrepancy. First, many patients terminated their VO2max test for reasons other than maximal effort. As a result less than 25 per cent of VO2 max tests achieved a true maximum, as defined by physiological responses (Baldiet al., 2003). Consequently, we used VO2 peak as our measure of fitness

Link to full paper https://sci-hub.cc/https://doi.org/10.1177/1359105305049774

 

[Countrygirl]

8 500!!

 

[Barry53]

Exercise is a powerful intervention.

So is a loaded gun.

 

[Countrygirl]

9 000!!

 

[slysaint]

"Dr Phil Hammond ✔ @drphilhammond
But all our patients with CFS/ME have post exertional malaise"

So what exactly is their definition?

From his interview with EC last year:
Esther Crawley said
"
So chronic fatigue syndrome is defined or is diagnosed in children or in adults who have fatigue that stops them doing things, so it has to be disabling, and it has to last a long time. So in children it has to last at least 3 months, in adults 4 months. And then there’s a range of other symptoms that are very common in the condition - So one of the one’s that’s most helpful for diagnosis is something called Post Exertional Malaise; so what that means is that after you do something, you feel much worse afterwards – and that’s very helpful in differentiating and helping us know (for example) that it’s not depression.
[12.14 PH] So some children who do physical activity can be wiped out for several days afterwards, sometimes longer, they can be ‘crashing’.
[12:20 EC] That’s right. Other problems can be headaches; memory and concentration problems are almost universal in this condition; there’s a particular sleep pattern, where for both adults and children, which is that [12.32] it’s very difficult to get off to sleep, and very very difficult to wake up in the morning; teenagers with this condition always sleep too much. So that’s the diagnosis."

Simples.

 

[Barry53]

'Exercise is a powerful intervention. Get the dose right, it can help some people. Get it wrong, it can cause harm. Which is why it is graded'

So apparently it does cause harm. But how does he know if no studies have shown that? Anyhow does he know what at the right dose is if nobody has studied 'dose' of exercise, as they should have done. This seems like condescending blather I am afraid. If Dr Hammond wants to be taken seriously by PWME I think he needs to be a bit more evidence based.

This is probably why Pacing works far and away the best for PwME, until medical science comes up with anything better. Pacing is about patients learning to listen to their own bodies and illness, and applying their own "process control" to how much they can and cannot do, should and should not do.

One of the biggest difficulties with any form of process control is dead time, a pure time delay between cause and any effect, with no measurable indications of change available during that dead time. Yet when that effect appears at the other end of that delay it can be dramatic. Because the control system has no information to go on during that time delay, it cannot take any corrective actions.

All sorts of processes can have dead time delays, maybe having transit times on conveyor belts, or dosing a liquid and only able to measure the effects after it has travelled some distance down a pipe, etc.

I'm not a process control guru (the math gets very heavy and way beyond my abilities), but I've worked in this area a lot, developing PID controllers in the past, so I have some insights. In the above scenario there are three broad strategies I'm aware of for dealing with such a control problem, though there may be others I'm unaware of:-

1. Still use closed loop control, but slow everything down, so that the controller does not overreact too quickly. If it does then the system will go unstable and oscillate, as the controller over-corrects too quickly. Akin to a car driver hitting a patch of ice, and flapping the steering wheel from one lock to the other, too soon and too much. The car ends up going side to side, and if not brought rapidly back under control, crashes. A problem with this approach is you may have to slow the overall system response a great deal, in order for the dead time to become a relatively minor component in the overall loop response time.
   
   
2. Employ open loop control. If feasible (it involves understanding the system characteristics well enough to preempt what what the delayed effect will be of a particular cause), this allows some corrective action to be taken as soon as the cause is observed, without waiting for it to trudge its way through the delay in the closed loop. If the system is sufficiently well understood, this is a very good way to go, because it helps avoid the control problems before they get a chance to set in. If.
   
   
3. A combination of '1' and '2'. If you still have closed loop control overall, then it's not quite so important to fully understand your system for the open loop control component; the closed loop control can "mop up" what the open loop part didn't quite get right. But the combined control strategies can give you better overall control.

I suspect that what we call Pacing, is where PwME instinctively learn to do something akin to '3' above. They get to know there bodies and their illness well enough, and become adept at applying a degree of open loop control, anticipating the potentially damaging effects of excessive exercise up front. Without this, people end up "over dosing" on exercise, and by the time the effect materialises at the other end of the time delay (PEM in this case) it is way too late to correct for it. PwME will likely still end up with PEM, but much attenuated compared to if they had not taken any look-ahead action.

Pacing must also include aspects of closed loop control as well, because the preemptive bit can never get things completely right, so there is inevitably going to be some control adjustment once the delayed effects of any exercise kicks in.

The point is that Pacing works best IMHO, because people learn to recognise and understand, far better than anyone else can, the overall control algorithm that works best for them, based on the signals their bodies give are giving them, and especially the particular time delays their bodies are subject to. I'm not saying PwME all learn to become control engineers, obviously not. But I think PwME instinctively learn how to adapt and apply such a strategy.

I suspect if might be very insightful for a Control Engineer (fully qualified and very good industrial track record) to team up with some medically qualified scientist(s), and just explore Pacing in this light, because both sides might be pleasantly surprised at the insights they both discovered.

 

[Quilp]

We are all different. I am different, from one hour to the next, from one minute to the next, No matter what I do I cannot control this illness.

I do all that I can, and despite this and for no apparent reason the illness can and will get worse. If I get better, I always try to assign, with forensic zeal, a reason why. I run with an idea, extrapolating it to infinity, landing only in despair.

At times, without any seeming cause and effect I nosedive.
At times I feel a little better, only for a few hours but just enough to keep hope alive.

In darkness I have never known I fight an enemy, hobbling tentatively along a cliff edge that seems never far away.
It's a like a nightmare, that sometimes you can't quite believe is really happening to you. And that this should be it, all there is and all there ever will be.

You know, sometimes I believe this illness cannot get any worse, and yet here we are being kicked around like a political football. If there was any justice, the match would be abandoned, and we would be given the recognition that we deserve, the attention we have missed out on and the treatments we so desperately need.

Even if I were to recover tomorrow, how would I ever begin to put this human being back together again.

 

[Countrygirl]

="Quilp, post: 914329, member: 243"]We are all different. I am different, from one hour to the next, from one minute to the next, No matter what I do I cannot control this illness.

I do all that I can, and despite this and for no apparent reason the illness can and will get worse. If I get better, I always try to assign, with forensic zeal, a reason why. I run with an idea, extrapolating it to infinity, landing only in despair.

At times, without any seeming cause and effect I nosedive.
At times I feel a little better, only for a few hours but just enough to keep hope alive.

In darkness I have never known I fight an enemy, hobbling tentatively along a cliff edge that seems never far away.
It's a like a nightmare, that sometimes you can't quite believe is really happening to you. And that this should be it, all there is and all there ever will be.

Very well expressed!

And, for some of us, even if there was a cure tomorrow, it would be too late.

All our adult lives are spent and galloping decrepitude, other autoimmune and cardiovascular diseases, some caused by ME, have now destroyed what we have left. We cannot even get the expected medical help given to others with the same diseases because of the disbelief in the existence of and the prejudice against people with ME which ensures that the patient is dismissed even with clear evidence of other serious and life-threatening conditions.

It is not an exaggeration to say this is genocide by wilful ignorance on behalf of the medical profession.

 

[Tilney]

My husband & I share the same computer. He has signed the petition.
I can not use the link to sign the petition in my name - it appears to recognise it has previously been signed.
I have tried the link to the ME association page as well - same recognition problem

I have also tried logging off & shutting down the computer - still not allowing me to access the bit where you input your name & email address- we have different email addresses

How do I sign?

 

[NelliePledge]

From a smartphone?

 

[Chrisb]

there’s a particular sleep pattern, where for both adults and children, which is that [12.32] it’s very difficult to get off to sleep, and very very difficult to wake up in the morning

I think this statement shows as clearly as anything the inadequacy of Crawley's understanding of the illness.

I have no doubt that there is a group for whom this is true. But equally there is another group who may find it difficult to stay awake until an hour which can reasonably be called bed-time, and then fall straight asleep. I count myself amongst this group.

There is disturbance of sleep patterns which may take a variety of forms. If she does not recognise this she must be seeing a very particular group of patients.

 

[Countrygirl]

9 500!!

 

[Tilney]

Tried the smart phone but - sign the petition link is not connecting

I have emailed the link to a friend (myself) but still not getting to the input name etc..

 

[Revel]

There is disturbance of sleep patterns which may take a variety of forms.

I struggle to get to sleep, but have never had an issue with waking in the morning, even if I have only managed 2-3 hours of slumber. Both a night owl and a morning lark - a strange bird, indeed (or so I'm told ).

 

[Countrygirl]

Just stumbled across this.

It is by our all-time favourites and published in 1989. It appears to be the start of the unhelpful information that we are protesting about here.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1711569/pdf/jroyalcgprac00001-0034.pdf

Management of chronic (post-viral) fatigue syndrome

SIMON WESSELY ANTHONY DAVID SUE BUTLER TRUDIE CHALDER

SUMMARY. Simple rehabilitative strategies are proposed to help patients with the chronic fatigue syndrome. A model is outlined of an acute illness giving way to a chronic fatigue state in which symptoms are perpetuated by a cycle of inactivity, deterioration in exercise tolerance and further symptoms. This is compounded by the depressive illness that is often part of the syndrome The result is a self-perpetuating cycle of exercise avoidance. Effective treatment depends upon an understanding of the interaction between physical and psychological factors. Cognitive behavioural therapy is suggested. Cognitive therapy helps the patient understand how genuine symptoms arise from the frequent combination of physical inactivity and depression, rather than continuing infection, while a behavioural approach enables the treatment of avoidance behaviour and a gradual return to normal physical activity.

. One of the principal functions of therapy at this stage is to allow the patient to call a halt without loss of face. This is most likely to be achieved if the doctor is perceived as open-minded and enquiring

A useful analogy may be the recovery of someone involved in a hit-and-run accident, emphasizing that pursuing the car at this stage will bring no benefit. The process is therefore a transfer of responsibility from the doctor, in terms of his duty to diagnose, to the patient, confirming his or her duty to participate in the process of rehabilitation in collaboration with the doctor,

Many sufferers have been told that 'physical and mental exertion is to be avoided' (ME Action Campaign factsheet, 1988). This may be. correct in some cases, but there is as yet no way that these cases can be identified. In general such advice is counter-productive, and must be set against the following: - the harmful effect of disuse and inactivity on muscle function, in addition to respiratory and cardiovascular performance;'4 - the psychological benefits of exercise on emotional disorders;'5 - the adverse psychological effects of lack of exercise;'6 - the deleterious psychological effects of avoidance of feared situations, as in agoraphobia;'7 - recent evidence that dynamic muscle function is normal in patients with chronic fatigue syndrome, muscles being neither weak nor fatiguable

loss of tolerance to activity and the fear-avoidance model. Ideally a behavioural programme should be individually tailored, with agreed targets appropriate to the degree of initial disability. However, it is likely to involve the following features: 1. Regular exercise, with which the patient can feel comfortable. 2. A graded increase in exercise, involving walking, swimming and so on. 3. Encouragement of exercises such as yoga and callisthenics. 4. Gradual exposure to all avoided activity. 5. Cognitive work to break the association between increase in symptoms and stopping or avoiding the activity. 6. Further cognitive strategies involving alternative explanations for symptoms. For example, if the patient admitted to thinking 'I feel tired, I must have done too much', one might ask the patient to look for alternative explanations, such as 'I may be tired because I haven't being doing much lately' 7. No further visits to specialists or hospitals unless agreed with therapist. 8. Involvement of a co-therapist.

In addition to fatigue, emotional symptoms are a central feature of chronic fatigue syndrome, being variously described as 'cardinal'21 or 'characteristic'.22 Thus, a psychological assessment is mandatory. Patients are often wary of this, seeing it as suggesting that their illness is all in the mind. If depression is a major factor, then adequate treatment may be needed before patients can embark on the programme outlined above. Stephens has stated 'Good mental health is not a sufficient condition for initiating exercise but may well be a necessary one'.23 An important way of gathering information and helping the patient to understand his or her symptoms is to introduce the concept of stress. Any stresses occuring prior to, and during the onset of the illness should be specifically noted. This is not just a way of obtaining background details but provides useful information that may be incorporated into management.24 Any patient with a severe and potentially chronic illness, whether rheumatoid arthritis, multiple sclerosis or chronic fatigue syndrome, requires a psychotherapeutic approach. The basic features common to all supportive psychotherapies, such as appropriate reassurance, regard, ventilation of distress and acceptance of feelings, are especially applicable to chronic fatigue syndrome. As regards formal psychotherapy, there is some rationale for avoiding insight-directed therapy, as sufferers are often already highly introspective25 Certainly, a deeper examination of earlier history may be welcomed, but can wait until the patient is able to give such details without feeling challenged.

 

[Invisible Woman]

My husband & I share the same computer. He has signed the petition.
I can not use the link to sign the petition in my name - it appears to recognise it has previously been signed.
I have tried the link to the ME association page as well - same recognition problem

I have also tried logging off & shutting down the computer - still not allowing me to access the bit where you input your name & email address- we have different email addresses

How do I sign?

Try clearing your cookies?

 

[Revel]

Try clearing your cookies?

Any excuse to shoehorn biscuits into a thread . . .