A novel definition of 'chronic'.
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Leaflet on paediatric ME/CFS circulated by AYME to 10,000 UK GPs
- Thread starter Dolphin
- Start date
A novel definition of 'chronic'.
My doctor used to enjoy the old joke that the definition of an alcoholic is someone who drinks more than his doctor. It seems probable that the incidence of personality disorders in each of the professions will resemble that in the general population. Sometimes one is forced to look at people and wonder.
Long before I fully collapsed and got a diagnosis I already had the onset of sleep reversal. Given that I was a paediatric case and was struggling to keep my head above water staying at school, you can imagine how well that fit around a school day. Had my parents not allowed me to sleep in during the weekends I would only have been even more chronically sleep deprived than I was already. It would literally have achieved nothing else. I don't believe for a minute it would have either prevented the onset of my ME, or prevented its eventual severity, to have them deprive me of the bits of sleep I was able to claw back at weekends. I firmly believe that had I been prevented from catching up on what sleep I could gain at weekends, the only thing it would have achieved in my case is that the crash that led to my diagnosis would have come much sooner.
After I left school to be home educated, when my parents had had enough of the complete lack of support we were getting, and the vilification of us as a family because I was ill; I had a period where I wasn't yet severe so was ambulatory, and this was in the period before I collapsed totally and was diagnosed. I had bouts of hypsersomnia during this time, and after diagnosis, where I could be solidly unconscious for anywhere from 24 - 72 hrs. Trying to wake me during these times, resulted in me being totally zombie like and unaware even when I was being encouraged to have a sip of water, helped onto the commode etc. I have massive chunks out of my memory of this period in time because I spent a lot of time in this state, 'awake' but totally unaware. The idea that depriving sick people, Children or adults, of sleep when they can claw it back, when they are already likely to be totally exhausted and sleep deprived as well, only makes sense in 'opposite world' to me. for me it made the illness much worse and my quality of life much worse right along with it.
I can/ could also be totally unable to wake up during hypersomnia, it seriously wouldn't had mattered if the Incredible Hulk decided he was going to remodel my bedroom, by getting all 'Hulk, smash!'. I still wouldn't have woken up. On the occasions my parents did manage to wake me based on 'sleep hygiene' advice, e.g. 'It doesn't matter how little sleep she has had in the night don't let her sleep in, this will let her sleep the next night' (ha, yeah right!) All it would achieve was stealing the time my body/ brain would let me sleep, meaning I frequently wound up being awake 24hrs, or even 72hrs, after having only half an hours sleep or so, because it had further messed up, already messed up sleep patterns. So waking me at a 'reasonable' time didn't help me go to sleep at a 'reasonable' time. It simply meant I got less sleep overall, at a time when my body very clearly needed it; and I'd be stuck awake on less sleep than I could have had, until my body or brain let me sleep again.
For the most part we've just learnt to go with sleep issues and respond to them as they arise, adjusting to whatever sleep pattern I'm on at any stage etc. we've tried many different things over the years to try and battle sleep problems, even returning to routines and sleep hygiene methods of 'cooling down' ready for sleep by no screens etc. for hours before bed. It never, ever works long term and in the short term seems more like it works out of the fact that my body was ready to sleep anyway by itself, rather than due to any specific intervention like a routine. Trying any intervention typically means I just wind up even more exhausted (which impacts all other symptoms too) than usual and with a worse quality of life as a result. The only thing that's ever helped with sleep is melatonin, and not even always then, and it took a good ten years for a doctor to even think about offering it to me, and then it's occasionally been tough to get more since when I've asked. It's always been 'sleep hygiene' advice offered to us as well, which makes me cross like it does other people. Not only does it not work, to me it shows, IMHO a total ignorance of our illness.
Firstly keeping your bedroom just for sleep is very, very hard when you live your life from bed/ bedroom all, or even part, of the time which a lot of us have to by necessity. Especially if they are over exerting which results in mini crashes or PEM, for example, pushing yourself to get through a school week when the school won't offer flexible support and help and/ or they don't have a diagnosis, and then crashing out in the weekend. Been there, done that. Secondly, as Effi says there is a lot of unnecessary guilt attached to it IMO, if you 'fail' to implement its principles, or if you do and they don't work. They are also too inflexible about various things. I often mange to drift off to sleep easier if there is a bit of music, or an audiobook or a film playing on low volume even if I'm not paying attention to it. Because while a dark, quiet room is more restful in theory, it also means I'm laying there trying to switch my brain off from focussing on the pain I have, or the chest pains, or the palpitations, or the difficulty I'm having breathing etc. etc. those symptoms clearly don't disappear if I have something on the TV etc. but I do have a different point of focus when I'm drifting off to sleep. So it's by far the lesser of two evils for me the majority of the time. Someone looking in from outwards, however, would look and say 'well there's your problem!'. But I don't think so, because I've tried routines and darkened rooms and it doesn't work, ever. And it's pretty poor IMO to make people feel guilty about using techniques which distract them from their illness as best they can.
When I was first ill, when I was actually conscious, I didn't want to live, I wanted to die. I don't mean to upset anyone or be insensitive, but i Literally wanted to die, I'm extremely glad I didn't, but that was how I felt at the time. Among lots of other issues, I couldn't move, could even barely wiggle fingers, could barely speak, could hardly eat even liquid food, my mum was getting it into me a bit at a time on a teaspoon. I couldn't even turn myself, but I could 'watch' TV on a low volume. I say 'watch' because it's debatable how much I was taking in most of the time. I was in constant pain, still am but nowhere near like that, to the point that my mum or dad, or siblings could hardly touch me to offer even comfort, let alone struggling to manage care. My parents rigged up a TV for me and let me watch it as and when I wanted to, because it was the only thing I could do, and only thing they could do to distract and comfort me. They were made to feel very, very guilty about this for reasons which ranged from 'if you make her too comfortable she won't want to get better!' To 'no wonder she won't sleep, she's watching TV all night!'. No, actually I was desperate to sleep, the reason why I watched TV was because I couldn't and because of the above. Again for us it was the lesser of two evils, it still is because I can't rest in a dark, quiet room because it brings back very bad memories relation to all of this, which defeats the object of trying to rest in that way; so having some sound or whatever playing helps, but it's obviously counter to sleep hygiene advice. But the point I'm making, or trying to make, is that my parents were made to feel guilty for trying to find the best solution for me in complex circumstances because they didn't adhere to a rigid set of instructions to 'help' me sleep even though they could see it wasn't helping, but was in fact doing the opposite.
Sorry this is rambling and waffling, I'm not very good at the minute. I'm not even really sure what my own point is :thumbdown:
, just that in my own experience enforcing rigid routines with sleep doesn't help and often doesn't work. And I really cannot see why, when you have an illness can literally exhaust the body, why sleep is seen as the enemy when it can be so hard to get in the first place.
@Debbie23 thanks for sharing your story. No matter how many stories I read from fellow patients, I am always touched by how much suffering there is. But also how much strength, from patients as well as carers. I can relate to the tv in the background. It helps me get away from my nervous system in overdrive and helps my body to relax (as far as that's even physically possible).
Imagine a doctor saying to a patient who has a very severe case of the flu: you HAVE to get out of bed every day at seven AM, and stay busy all day, or else you'll never get better. Everybody would say this doctor is crazy. Giving us that advice is still the norm, although we are a 1000 times sicker than someone who has the flu. I'd say THAT is crazy.
Thank you, Effi. I always feel the same way when other people share their experiences.
That's exactly how it is with the TV, especially in the 'tired but wired' thing so many of us get. And I agree with you about how crazy it is to push people who are ill into routines and getting up out of bed, rather than encouraging rest and listening to their bodies. How many illnesses are people encouraged to 'sleep off', especially in the early stages? I'm not for any second saying sleep alone could cure ME, but I'm sure based on my experiences that being forced to wake Etc. before the body is ready certainly doesn't help!
Large Donner
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What's the point of her then.
daisybell
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My brother had EBV very severely when he was about eleven. My mother took him out of school completely, against the recommendations of the school and school doctor. He spent several months lying in bed or on the sofa at home - I recall finding him lying on the floor of the bathroom unable to get back to bed after getting up for a pee...
He retook a year of school in the end.
At no point was CFS mentioned, luckily for him. Our family doctor was supportive which must have helped my mother hugely. He certainly would have met the criteria as they stand, but he did recover. It took a number of years to get back to full strength.
He retook a year of school in the end.
At no point was CFS mentioned, luckily for him. Our family doctor was supportive which must have helped my mother hugely. He certainly would have met the criteria as they stand, but he did recover. It took a number of years to get back to full strength.
Research 1st
Severe ME, POTS & MCAS.
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The point of the BPS CFS therapist or theorist is to dis-inform the alleged chronic neurotic who 'thinks' they have a physical disease (ME). nb: A belief in disease prevents the spell (neurosis therapy) from working. GET in BPS CFS is exposure therapy for the alleged 'fear' activity worsens symptoms. If you WERE neurotic, that is a common sense approach to tell the patients. Convince them they aren't sick, and tell them to do more, to demonstrate they were wrong. (Basic logic).
Yet ME CFS is not categorised as a mental illness, so the presumption of mental illness driving
symptoms is simply based on:
1) Disbelief the patient is organically ill.
2) Ignoring decades of published biomedical research.
3) Devising their own weak criteria to include more mentally ill people to proven their theory correct (Oxford criteria CFS). This still failed in the PACE trial.
Points 1) and 2) would get you struck off from the medical register for MS, however in current times, abuse is award winning. Due to medico politics, a disease as disabling as ME is languishing in the garbage bin politically.
Naturally, opportunists can exploit this situation and make CFS theirs - precisely what has happened since the CDC
prevented new diagnosese of PVFS and ME, via the Fukuda CFS 'explaining' the unexplained disability hobbling previously fit and health children and adults.
In the long run, now so many adult patients have suffered and a subset died worlwide due to neglect since 'CFS' was created, I wonder who pays for this legally approved child abuse in the courts? (CBT GET to 'treat' neurological chronic ME is clearly scientific fraud).
With regards to the UK system and duty of care a doctor has, the responsibility for harms looks complex and this ongoing medical disaster lies with more than one party:
The individual in the community misinforming a child and their family (GP, psychologist).
The researcher claiming their work is evidence based.
The health authority who sold the non science based 'evidence' fraud on to the health system as 'expert knowledge'.
The private insurance industry who charged money for 'CFS' patients to be 'treated' (money paid) for a therapy that doesn't work.
As 1 in 3 UK adults born now are predicted to develop Alzheimer's in the future (Alzheimer's autopsy is directly associated to Lyme and had been for ages), I can see a tragic outcome from this multi decade, Chronic Fatigue as ME nonsense.
http://www.independent.co.uk/news/u...ll-develop-dementia-report-says-10510236.html
ME is an infection based autoimmune disease is what drives symptoms not 'belief' in disease.
There are neurotic people, but they don't have the hallmark symptoms of ME (OI, PEM etc).
The opportunists refused to split ME from chronic fatigue of unexplained cause (all they had to do).
The opportunists never explicitly stated their tired people are not 'ME'. Far from this.
The UK Department of Health did not allow ME in isolation of CFS. It thus created 'CFS/ME' (public health disinfo) as an imaginary condition (no medical condition exists with a forward slash containing another condition!). E.g Asthma/Back pain. Chronic Fatigue/Renal disease. What could go wrong, if they had got it wrong? (Uncontrolled disease spread, that's what).
Through the wizardry of trying to get a patient to cast a spell on themselves to 'believe' they will recover with CBT, we can see why this is encouraged by the state a blind eye approach becomes a keen eye of NICE. (Who still won't include a TILT table test as part of a CFS/ME diagnosis to screen for POTS, which is common in ME and neurological).
A cheaper way to manage a public health crisis like ME, is disease denial. Psychology and psychiatry is a wonderful panacea for a sweating bean counter.
Yet ME CFS is not categorised as a mental illness, so the presumption of mental illness driving
symptoms is simply based on:
1) Disbelief the patient is organically ill.
2) Ignoring decades of published biomedical research.
3) Devising their own weak criteria to include more mentally ill people to proven their theory correct (Oxford criteria CFS). This still failed in the PACE trial.
Points 1) and 2) would get you struck off from the medical register for MS, however in current times, abuse is award winning. Due to medico politics, a disease as disabling as ME is languishing in the garbage bin politically.
Naturally, opportunists can exploit this situation and make CFS theirs - precisely what has happened since the CDC
prevented new diagnosese of PVFS and ME, via the Fukuda CFS 'explaining' the unexplained disability hobbling previously fit and health children and adults.
In the long run, now so many adult patients have suffered and a subset died worlwide due to neglect since 'CFS' was created, I wonder who pays for this legally approved child abuse in the courts? (CBT GET to 'treat' neurological chronic ME is clearly scientific fraud).
With regards to the UK system and duty of care a doctor has, the responsibility for harms looks complex and this ongoing medical disaster lies with more than one party:
The individual in the community misinforming a child and their family (GP, psychologist).
The researcher claiming their work is evidence based.
The health authority who sold the non science based 'evidence' fraud on to the health system as 'expert knowledge'.
The private insurance industry who charged money for 'CFS' patients to be 'treated' (money paid) for a therapy that doesn't work.
As 1 in 3 UK adults born now are predicted to develop Alzheimer's in the future (Alzheimer's autopsy is directly associated to Lyme and had been for ages), I can see a tragic outcome from this multi decade, Chronic Fatigue as ME nonsense.
http://www.independent.co.uk/news/u...ll-develop-dementia-report-says-10510236.html
ME is an infection based autoimmune disease is what drives symptoms not 'belief' in disease.
There are neurotic people, but they don't have the hallmark symptoms of ME (OI, PEM etc).
The opportunists refused to split ME from chronic fatigue of unexplained cause (all they had to do).
The opportunists never explicitly stated their tired people are not 'ME'. Far from this.
The UK Department of Health did not allow ME in isolation of CFS. It thus created 'CFS/ME' (public health disinfo) as an imaginary condition (no medical condition exists with a forward slash containing another condition!). E.g Asthma/Back pain. Chronic Fatigue/Renal disease. What could go wrong, if they had got it wrong? (Uncontrolled disease spread, that's what).
Through the wizardry of trying to get a patient to cast a spell on themselves to 'believe' they will recover with CBT, we can see why this is encouraged by the state a blind eye approach becomes a keen eye of NICE. (Who still won't include a TILT table test as part of a CFS/ME diagnosis to screen for POTS, which is common in ME and neurological).
A cheaper way to manage a public health crisis like ME, is disease denial. Psychology and psychiatry is a wonderful panacea for a sweating bean counter.
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We have some data from adult UK CFS/ME services. The results were not very impressive (remember there was no treatment comparison group: one would expect a no treatment comparison group to improve a bit on average once diagnosed)
Free full text: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665909/
Free full text: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665909/
Do you think they knowingly excluded a no treatment comparison group? I agree that they would have the best results on average, by pacing and not being subjected to the abuse of a rehabilitation programme (which I am starting to believe actually leaves people emotionally and physically scarred for a long time).
Even less improvement in physical functioning than in most of the trials? Or is this a way of politely saying patients are worse off after using the services?
alex3619
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I tried to keep a schedule during my last university degree. It just resulted in me become so sleep deprived my OI was out of control for a while.
alex3619
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This is my experience as well. I now have a free running circadian rhythm. I sleep when I can. This allows me to sleep between zero to ten hours per day, depending on when my brain lets me. If I do not do this I can get a solid three hours sleep ... but not every day is that good.
Well, it wasn't a research trial so they probably wouldn't have an easy comparison group to hand.
Physical functioning in this case refers to the SF-36 physical functioning subscale, which does tend to show some improvements in CBT and GET trials. This is different from an objective measure.
Even less improvement in physical functioning than in most of the trials? Or is this a way of politely saying patients are worse off after using the services?
The group went from 40.6 to 45.0 or an increase of 4.4 points. Healthy people of working age usually score 95 or 100 out of 100.
In the PACE Trial, the Specialist Medical Care-only group who didn't get an individual therapy (i.e. no CBT, GET or APT) increased from a mean of 39.2 to 50.8 or an increase of 11.6 points.
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AYME's GP leaflet said:
The quotation seems to have come from Phil Hammond, who is acknowledged at the end of the leaflet. It is a strange comment because he has joined the team at Bath, so is no longer working in general practice, having retrained. Recognising the name as a 'TV doctor' but not being able to place him, I googled him: he's the doctor / comedian who used to write for Private Eye and did stand up.
That search led me to a transcript of the Radio 4 programme Case Notes, which featured Esther Crawley. There's a hilarious comment early on about the contentious name issue but, more importantly, later in the programme she confirms the point that user9876 made:
So she is admitting that a lot of the patients who recover have glandular fever not ME/CFS. If this is typical of paediatric services, then it does tend to explain the higher childhood recovery statistic over adults. Is there a case to be made for excluding confirmed glandular fever cases of relatively short duration from a diagnosis of ME/CFS?Esther Crawley said:
Very sorry to hear that. So fortunate that you were prepared.Indeed.
If it is naturally time limited, then the best any therapy can do is reduce the time it takes to resolve itself, and reduce the broader, longer term, post-resolution impact. But there is not a lot of hard evidence they are delivering even that much by any means, except possibly in a limited, indirect way via early diagnosis.
Can't believe when I was first ill these where the people me and my family turned to for advice.
I was thinking that too. We used to be members of AYME, looking round their website is pretty disheartening now I'm an adult with a much better understanding of my illness.
It wouldn't surprise me if that's what happened to me as well when I was fighting to stay at school. When I was at school I didn't know anything about ME, let alone OI or dysautonomia. I used to genuinely, truly think I was having a heart attack because of the racing heart, cold sweats, chest pains, intense head aches, tunnel vision, sudden dead/ numb limbs and/ or shooting pains, jelly legs and breathlessness etc. etc. I used to have to lean against the walls of the corridor to stay upright While queuing for class, and often I used to lock myself in the toilet and sometimes black out against the side of the cubicle and think I was going to die. It would Possibly sound melodramatic to admit it to anyone else, but here I can be honest and say I used to truly think that was what was happening to me as a child, feeling like I could tell no one because they wouldn't believe me; because when I did, they didn't. Ever. The more I learn about this illness the more shocked and disgusted I get that this was always put down to 'school phobia', and even worse malingering, when I tried to talk to adults about it as a kid. Okay, I didn't articulate it well at all because I had no idea what was happening but no one was interested beyond slapping that label onto it and trying to literally bully me back to school. I don't include my poor parents in that btw, they were doing their best while being threatened with all sorts because my attendance was so poor because I was forever catching viruses and (I can now see in hindsight) crashing out, but pretty much everyone else who ought to have provided support were slapping that label on me and didn't seem bothered about any of the rest of it.
When I think of the simple things that wouldn't have eradicated the issues I was having, but could have helped had anyone tried to get to the bottom of things, it makes me not just mad, but sad that some adults who supposedly work 'for' children are often content to fail them so badly as I saw in my experiences. Even just being told there was a name for what was happening to me would have helped back then, being told there were very simple things which could theoretically help to improve my lot would have stopped school from feeling like hell on earth in a lot of ways. I know this isn't exclusive to children's advocates, or who ought to be in that category, however.
Again, very familiar!
alex3619
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Some time around age 11 or so I never mentioned it again. What they cannot see isn't real to most people. I also had no clue as to what was wrong at that age, though to be fair this was the early 70s and its would be more than another decade before I ever heard of ME. Nor had anyone told me that people can have ongoing issues after viral encephalitis which I had at age 7.
Keith Geraghty
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as an ME/CFS researcher I was under the impression from reviewing data over a long period that teenagers who are fatigued or just about meet the criteria for CFS have about a 90%+ chance of recovery to normal health within two years with absolutely no interention what so ever. Its a minority who go on to develop long term ME/CFS, most likely due to suffering some illness like EBV that doesnt clear in certain individuals and persists into ME/CFS; while the majority of younger people recover more quickly than adults who tend to have much worse recovery rates if ill with ME/CFS longer than two years -- the data promoted by this leafet is rather unusual to say the least.
I would recommend contacting AYME to draw their attention to it - I personally dont think it serves the ME/CFS community or patients well.
I would recommend contacting AYME to draw their attention to it - I personally dont think it serves the ME/CFS community or patients well.
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