UK: House of Lords to debate PACE study, Weds 6 Feb 2013

[Esther12]

Define 'harm' ! Many interventions involve negative effects, if a certain number of people are helped, then health service providers are going to be attracted to that intervention. A 'they shall not pass' approach is unlikely to be persuassive, and something rather more tactical is needed if M.E/CFS patients are to impact upon what is offered by the NHS. On the face of it the Frenchay model looks somewhat more patient friendly than anything that came out of PACE, it may therefore be a useful negotiating reference.

Hard to define harm without just using terms like 'injury'. I don't think I'm using the term unusually though, so should be widely understood.

It's true that there does seem to be a strange resistance to the notion that people can be truly ill, and yet there is still no respectable way for doctors to make money out of treating them. Maybe this time of cutbacks might leave people more open to the possibility though. I wouldn't be that surprised if those medical staff facing cutbacks outside of CFS are a bit confused as to why money for CBT and GET for CFS should be found when their results are poor, and they are unpopular with so many of the patients who have tried them.

I don't know much about the patient voucher thing that is coming it, or how it will relate to CFS. Maybe that will give patients more choice over how funds are spent upon them, and letting those who think CBT and GET would be a good priority to decide that for themselves (I want a bouncy castle for an exercise aide... or maybe I could hire a doctor to churn out intimidating medical reports for the DWP).

 

[Undisclosed]

It's really unfortunate that yet another thread has gone totally off-topic.

Please remember that it is a rule breach to question the presence of any member on this forum:

questioning why somebody is present on the forum (accusing them of being a "mole" or a "troll")

This forum has not been taken over by members of the Bad Science Forum. There is no rule that states members here are not allowed to join other forums. There are no rules here that states a member must adhere to the opinion of the majority.

If you don't like the opinion of any other member, refute it politely -- do not post personal attacks.

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This thread is closed until we clean up the rule breaches.

Thank You.

 

[Undisclosed]

Please Note -- the thread has now been cleaned up and opened.

Quite a few posts have been removed/edited. Some of the posts were outright rule breaches. Others were fine but were removed because they had quoted and responded to posts that were rule breaches.

If you are wondering why something was removed, you can contact me via Conversation. This is a circumstance where I just don't have the time or energy to send each involved member a Conversation.

Again:

Please avoid questioning a member's diagnosis, judging them according to what forums they belong to, posting personal attacks, calling members trolls -- these are all rule breaches. If you have a concern about any member, please contact a moderator and provide information. Having a differing opinion is not a rule breach nor is it trolling.

We do have an ignore function and I suggest that if you just can't tolerate the opinions of certain members, then put them on ignore.

Thank you.

 

[Roy S]

Is exercise intolerance is a diagnostic symptom ? What does 'exercise intollerance' mean ? Is M.E/CFS a neurological illness ? Is there just one single aetiology in play ? Is everyone with M.E/CFS fixed at a single level of capacity ?


The 'many people/members/patients' proposition is meaningless - who, where, when ? Equally meaningless is the 25% proposition - who fits and who doesn't ? Why is 25% significant but not 19% or 31% ? Who says a quarter (even if that actually meant something) are ignored ? IVI

 

[irwinsturtle]

I think the person who asked these questions should researc for the answers. Just because they dont know them does not mean theyre are no significant numbers of severely affected. Obviously there are from what we know already. IVi should start their research with the 25 % group.

 

[In Vitro Infidelium]

PEM (exercise intolerance) is a diagnostic symptom for ME under non-Oxford criteria. As long as researchers are going to put ME patients and chronic fatigue patients into the same boat, they can damned well prove that that boat is suitable for all of us. And if they're ignoring PEM, they aren't doing that.

Where is there any explication of an equivalence between there term 'exercise intollerance' - and Post Exertional Malaise ? "Exercise Intollerance" suggests that any negative effect must be directly consequential on 'exercise' (definition of 'exercise required) and which is impacting to a degree that profoundly inhibits further 'exercise' or entrains other incapacitating organic processes which are directly attributable to 'exercise'. PEM requires no such strictures - PEM defines an experience of illness that typically occurs after a notable elapse of time (12 - 48 hours ?) following a particular investment of 'effort'. PEM may be directly attributable to the 'effort' expended, in that an abnormal process in 'making effort' is involved (muscle function, metabolic function etc), BUT equally PEM could be an illness states 'provoked' by a wholly normal response to 'effort', and where the abnormality/dysfunction/disease is entirely unrelated to any expediture of 'effort' - whether effort is defined as 'activity', 'exercise', 'physical effort', 'mental effort' or however else.

These are not minor semantic points - the arguments M.E/CFS patients wish to make are about science (critique of 'not science' still has to take place in the context of science), claiming that something is meaningful (in this case exercise intollerance) when it is not, does not further understanding of the illness, nor communication of what the illness is about, beyond the narrow confines of patient forums and organisations. It certainly doesn't provide any kind of rebuttal to disputed research.

If, (and I would argue that it most definitely is), PEM is a 'cardinal' feature of M.E/CFS in at least an definable subgroup of M.E/CFS patients, then being very clear about what is meant by PEM and what limitation that term entails, is profoundly important. At this stage I'm unclear that PEM stands a critical feature in challenging the PACE sequence of research - it may be, but someone is going to have to do an awful lot of work to provide a proper presentation of the confounding effect PEM would have on the published results. Yes, it may be obvious to us why PEM matters, that isn't the same thing as achieving rigorous demonstration of what is at play.

I have no problem with CFS being an umbrella term, but as long as they're equating it to ME then they need to do it properly. And ME certainly has neurological symptoms, except to the BPS school and whoever they dupe into believing them.

Neither ME nor CFS are meaningful terms, trying to make one have more 'import' to other is just playing cats cradle with different coloured strings; and objectifying the 'enemy' under terms like 'BPS school' is merely a perpetuation of 'we hate them and they hate us' without any reasoned way of changing the situation. Everyone is free to do it of course, personally though I find it a complete yawn.

IVI

 

[In Vitro Infidelium]

The severely affected have NO specialist at all treatment in this country - is there another illness this is true of?

They are conveniently ignored by the Wessely school of psychiatry whose pet theories only fit those with the mildest vaguely defined fatigue.

I would think the fact that 'the most severely affected' of many diseases end up dying would be pretty clear evidence that all 'treatment' has limits. There is no 'Wessely school of psychiatry' - in the context of PACE your appeal to ad hominem blanket approprobation really only works as 'White school of psychiatry' - still isn't meaningful beyond the insult though. Your argument appears to be that because a 'treatment' is only applicable to those you deem 'less ill' that the treatment is not significant. This is an argument that is not going to be accepted by medics or politicians or the wider public - the HoL debate demonstrate the weakness of the argument, sense would suggest finding a new argument.

IVI

 

[peggy-sue]

As far as my experience is concerned, exercise intolerance means the bit when something pushes me into anything aerobic - like suddenly shifting from walking slowly on the flat, which I can manage for a couple of hours with no trouble, to trying to walk uphill or up steps.
As soon as the extra workload of gaining height is added, I get severe lactic acid pains in my legs which bring me to a halt. My body won't DO aerobic anything. I have to stand there with my legs bent, waiting for the pain to go, before I can get up the next wee bit, get the pain, wait for it to go, walk the next few steps....

Too many episodes of this happening, all at one time will lead to PEM.

PEM is what happens after something like a weekend break, or a big day out, or a holiday, or a cold or the 'flu.
It's a major downturn in everything and exacerbation of all symptoms, it's back-to-bed-time.

As the illness has gone on over the years, so the delay between the overdoing and the hitting with PEM has grown.
So has the length of time it lasts.

 

[Valentijn]

Exercise intolerance is a very broad term. It certainly seems to include PEM. And in addition to PEM, many of us do get more immediate non-PEM exercise intolerance symptoms - pain, cramps, muscle twitching, and sometimes even muscles ceasing to function completely for a time.

 

[Min]

Is exercise intolerance is a diagnostic symptom ? What does 'exercise intollerance' mean ? Is M.E/CFS a neurological illness ? Is there just one single aetiology in play ? Is everyone with M.E/CFS fixed at a single level of capacity ?

I didn't write 'rehabilitate' - the term I used was 'rehabilitive' - that is pursing a course that may restore/improve function. At present we have no definitive aetiolgy (in spite of the WHO classification) and we clearly have massive range of capacities across the patient population, and as things stand the condition termed M.E or M.E/CFS or CFS or CFS/M.E appears heterogenous and therefore different treatment interventions are likely to be beneficial for some patients and not others.

The 'many people/members/patients' proposition is meaningless - who, where, when ? Equally meaningless is the 25% proposition - who fits and who doesn't ? Why is 25% significant but not 19% or 31% ? Who says a quarter (even if that actually meant something) are ignored ? If it is the case that someone is too disabled to participate in a particular therapy it makes no sense to include those people in trials of that therapy - this doesn't mean the therapy is not of benefit to some of those people who are capable of participating - and the capacity to particiate doesn't negate a diagnosis of M.E or M.E/CFS or CFS or CFS/M.E. Whether the benefit of a therapay is significant enough to warrant standard service level provision is another issue, " in a sort of 'one size fits all' approach makes no sense.

IVI

Why is 25% significant but not 19% or 31% ?

How do I know? Am I supposed to find this out from lying on my settee? My figures are from the 25% Group, the UK medical authorities do not keep figures on the severely affected that they simply ignore.

but starting out from a position that says "some of us are very ill, therefore no treatment must be considered unless it benefits the most ill

I said nothing of the sort.

The severely affected in the UK receive no specialist treatment at all. They are ignored by research. How is this right? is there any other illness this is true of?

 

[Shell]

Roy S Thanks for the link to the debate vid. I'll try and watch that when I can face it.

As Min says there are no specialist services for people severely (or even moderate-severe like me) effected ME patients. A truly nasty doc told me sneeringly that no one "would want to specialise in that." With that attitude what can we hope for.
Min - I was under the impression from stuff I've read somewhere (God knows where) that the 25% figure came from studies done by a number of ME charities, largely in Australia, who found one in four patients were too ill to fight toget any medical interventions and so were getting none. There may even have been some follow up studies/survey's in the UK .

I have scrolled past a lot of stuff here becuase I can't be bothered with long winded stuff - too knackered - but if the question is what's the difference between exercise intolerance and PEM and can they go together I would say, they must go together because if you can tolerate the exercise you wouldn't get PEM (and wouldn't have ME presumably).

In my case intolerance manifests itself in severe breathlessness and tacky with pain and sometimes blackouts (pre-synocope for those who insist on posh terms). PEM is collapse with pain that is off the chart and brain fog, and speech problems. Only thing to do is take drugs and sleep.
In the early days I would be fooled into thinking I'd gotten away with it when I didn't collapse straight away. I'm older and wiser now and know it will get me soon enough. I would like to know why PEM can delayed like that.

I think both the intolerance and PEM have been described to death by just about everyone who has ME. I am surprised there is still a question of what they are.
Even the bloody machines that medicine is way way too dependant on, are showing PEM so even that silly little box has been ticked.

 

[irwinsturtle]

I also think claiming terms are "meaningless" is not helpful. Obviously terms like ME, CFS and "severely affected" do have specific meanings, whatever we think of them individually.

 

[Firestormm]

I am categorised as a 'severe' patient. And I am afforded a service from my local ME service that in part is a home delivered service. NICE includes 'activity management' for severe patients. Severe patients were not included in PACE.

There have been several comments now stating that there are no services for severe patients. This is simply not true. It might be the case I suppose that a local provision does not/is not able to cater to severe patients but that seems rather daft to me.

I am also afforded symptom management through various drugs from the medical specialist in the ME Service and also by way of my GP who has been fairly receptive of the ideas advanced in the ME Association's Clinical Issues booklet.

NICE - from memory - also includes an estimate that 25% of those with this diagnosis may be considered 'severe'. This is/was based on previous estimates also - to my knowledge nobody has ever firmly established this.

NICE are also more realistic - to my mind - in saying that although some do appear to recovery others do not. We could do with some more work in this area I think.

 

[Min]

Firestorm said:

There have been several comments now stating that there are no services for severe patients. This is simply not true. It might be the case I suppose that a local provision does not/is not able to cater to severe patients but that seems rather daft to me.]

Cornwall does seem to be the exception if it provides home visits for the severely affected; it may seem daft to you (I'd call it abusive) but most house and bed bound sufferers are simply left to rot by the so-called specialist services in the UK. Your experience is not typical. I note that, after all this intervention, you still consider yourself severely affected.

 

[maryb]

So if I don't need activity management nor drugs what else is being offered? So you think NICE are being realistic saying 'although some do appear to recover others do not'. They shouldn't be using 'some' the truth is they're simply guessing, is it the mildly afffected who recover? In effect those for whom the diagnosis of ME was doubtful in the first place.
No amount of activity pacing, drugs for pain, sleep disorders, depression etc will address the issues that most ME patients have. Its a nonsense to even suggest our needs are being met in any way shape or form by the NHS and as for NICE well..............

 

[alex3619]

Nobody knows the exact percentage of severe patients, because no proper research has been done. Similarly we don't even have a definition of severe that is robust. There is no point in debating this issue much, and if we have to pick a figure why not 25%? - as long we we remember its an estimate at best.

We don't even know for sure if ME involves a growing population. Anecdotally it seems to be spreading, but thats not proof. Epidemics are typically not reported, but yes they do still occur - they have other names now, such as post-SARS syndrome and post-Q fever syndrome, just as we used to have post-polio syndrome. The best indication I have is that the population of ME patients in Canada doubled in 10 years, which I read recently somewhere, though this could in theory just be from better diagnosis and reporting. This is a Canadian official claim, I think. If this is the case, and its likely to be highly inaccurate, this equates to a spread rate at 7% per year. Thats high. That means the old 17 million figure is more likely to be about 34 million now (or more), and in ten years it could be 68 million, and in twenty years it could be 136 million. This of course presumes that there is no limiting factor that will halt the spread, such as only a specific subgroup in the population is vulnerable due to genetics. However let them try to ignore it when our tens of millions becomes hundreds of millions. At some point the political and medical authorities will have to take notice. Of course its also possible that its the misdiagnosis rate that is going up.

Exercise intolerance typically refers to immediate problems with exercise. We can get that but its not PEM. PEM is perhaps a delayed intolerance response. The physiology seems to include altered hormones and a marked decline in energy production, sometimes a severe decline (where I mean potentially over 20% decline in people who already have energy issues). Those hormone changes probably are connected to some of the symptoms, but I don't think we know the full story yet. There also appear to be pH changes and cerebral blood flow changes, but I would like to see research on this focussed on subgroups other than OI, not just OI.

This is not primarily an advocacy forum. Sure, we discuss advocacy, sometimes intensely. I agree that the formost view to keep in mind is this is a place for very sick people to communicate with others who might understand. It needs to be a safe place. There is of course an advocacy subforum, which is a better place for more robust debate.

There are provisions for more robust debate here other than that though. Private conversations and indeed private groups can offer this. Only a minority are interested in intense robust debate, it would be easy to set up a private group to debate a specific topic.

I do wonder though if its not time for there to be an advocates only forum somewhere, some place that debate and discussion from those actively engaged in advocacy might be encouraged and enhanced?

 

[Stukindawski]

Where is there any explication of an equivalence between there term 'exercise intollerance' - and Post Exertional Malaise ? "Exercise Intollerance" suggests that any negative effect must be directly consequential on 'exercise' (definition of 'exercise required) and which is impacting to a degree that profoundly inhibits further 'exercise' or entrains other incapacitating organic processes which are directly attributable to 'exercise'. PEM requires no such strictures - PEM defines an experience of illness that typically occurs after a notable elapse of time (12 - 48 hours ?) following a particular investment of 'effort'. PEM may be directly attributable to the 'effort' expended, in that an abnormal process in 'making effort' is involved (muscle function, metabolic function etc), BUT equally PEM could be an illness states 'provoked' by a wholly normal response to 'effort', and where the abnormality/dysfunction/disease is entirely unrelated to any expediture of 'effort' - whether effort is defined as 'activity', 'exercise', 'physical effort', 'mental effort' or however else.

These are not minor semantic points - the arguments M.E/CFS patients wish to make are about science (critique of 'not science' still has to take place in the context of science), claiming that something is meaningful (in this case exercise intollerance) when it is not, does not further understanding of the illness, nor communication of what the illness is about, beyond the narrow confines of patient forums and organisations. It certainly doesn't provide any kind of rebuttal to disputed research.

If, (and I would argue that it most definitely is), PEM is a 'cardinal' feature of M.E/CFS in at least an definable subgroup of M.E/CFS patients, then being very clear about what is meant by PEM and what limitation that term entails, is profoundly important. At this stage I'm unclear that PEM stands a critical feature in challenging the PACE sequence of research - it may be, but someone is going to have to do an awful lot of work to provide a proper presentation of the confounding effect PEM would have on the published results. Yes, it may be obvious to us why PEM matters, that isn't the same thing as achieving rigorous demonstration of what is at play.


Neither ME nor CFS are meaningful terms, trying to make one have more 'import' to other is just playing cats cradle with different coloured strings; and objectifying the 'enemy' under terms like 'BPS school' is merely a perpetuation of 'we hate them and they hate us' without any reasoned way of changing the situation. Everyone is free to do it of course, personally though I find it a complete yawn.

IVI

@IVI

Quite a lot of important points here. Not popular points it would seem.

When people or doctors ask me about my health lately, I tend to make more reference to my Orthostatic Hypotension since it's a meaningful diagnosis. The cause isn't known either but it's observable, reproducible and measurable. I often remark to Doctors now about the scientific meaninglessness of my ME/CFS diagnosis. I'm still waiting for one of them to engage with me on that.

How exactly to quantify PEM is indeed an important question. It is undoubtedly an abstract term. The question itself would frankly be worthy of a piece of research. Inflammatory response could be linked into an index of post exertional malaise and the term altered to LPEM (A R Light's PEM). In that scenario we would have a distinct term in respect of A R Light's work demonstrating a distinct inflammatory signature following exercise in a CFS cohort.

I'd be interested to hear more thoughts on this. I've never felt very confident about the term.

 

[golden]

the NHS has done something worse than nothing for me....

i could handle 'nothing' much easier...

the NHS has actively abused and bullied me.

i could do with help sharpening my ability to put all these different forms of abuse into words.

 

[Purple]

How exactly to quantify PEM is indeed an important question. It is undoubtedly an abstract term. The question itself would frankly be worthy of a piece of research. Inflammatory response could be linked into an index of post exertional malaise and the term altered to LPEM (A R Light's PEM). In that scenario we would have a distinct term in respect of A R Light's work demonstrating a distinct inflammatory signature following exercise in a CFS cohort.

I'd be interested to hear more thoughts on this. I've never felt very confident about the term.

The Stevens Protocol seems to be a measurable way to quantify some things that go on during PEM.

 

[golden]

on epidemics -

i recall reading munchaussens syndrome was being reported in epidemic proportions at one phase.

it was children who had m.e. - not only were they not being believed - but also the parents were being accused of making it up too.

i do believe a small number of psychiatrists were trying to report a physical epidemic.