She also said that CFS was time limited
A novel definition of 'chronic'.
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She also said that CFS was time limited
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.Not convinced of this. If patients are going to school during the week, they're probably getting up around 7-8 am. I'm not sure of any evidence that patients should be forced up at such a time at weekends.
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.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.
Thank you, Effi. I always feel the same way when other people share their experiences.@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.
What's the point of her then.She also said that CFS was time limited.
QJM. 2013 Jun;106(6):555-65. doi: 10.1093/qjmed/hct061. Epub 2013 Mar 28.
Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database.
Crawley E1, Collin SM, White PD, Rimes K, Sterne JA, May MT; CFS/ME National Outcomes Database.
Erratum in
Abstract
- QJM. 2013 Jun;106(6):567.
BACKGROUND:
Chronic fatigue syndrome (CFS) is relatively common and disabling. Over 8000 patients attend adult services each year, yet little is known about the outcome of patients attending NHS services.
AIM:
Investigate the outcome of patients with CFS and what factors predict outcome.
DESIGN:
Longitudinal patient cohort.
METHODS:
We used data from six CFS/ME (myalgic encephalomyelitis) specialist services to measure changes in fatigue (Chalder Fatigue Scale), physical function (SF-36), anxiety and depression (Hospital Anxiety and Depression Scale) and pain (visual analogue pain rating scale) between clinical assessment and 8-20 months of follow-up. We used multivariable linear regression to investigate baseline factors associated with outcomes at follow-up.
RESULTS:
Baseline data obtained at clinical assessment were available for 1643 patients, of whom 834 (51%) had complete follow-up data. There were improvements in fatigue [mean difference from assessment to outcome: -6.8; 95% confidence interval (CI) -7.4 to -6.2; P < 0.001]; physical function (4.4; 95% CI 3.0-5.8; P < 0.001), anxiety (-0.6; 95% CI -0.9 to -0.3; P < 0.001), depression (-1.6; 95% CI -1.9 to -1.4; P < 0.001) and pain (-5.3; 95% CI -7.0 to -3.6; P < 0.001). Worse fatigue, physical function and pain at clinical assessment predicted a worse outcome for fatigue at follow-up. Older age, increased pain and physical function at assessment were associated with poorer physical function at follow-up.
CONCLUSION:
Patients who attend NHS specialist CFS/ME services can expect similar improvements in fatigue, anxiety and depression to participants receiving cognitive behavioural therapy and graded exercise therapy in a recent trial, but are likely to experience less improvement in physical function. Outcomes were predicted by fatigue, disability and pain at assessment.
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).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)
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?Patients who attend NHS specialist CFS/ME services can expect similar improvements in fatigue, anxiety and depression to participants receiving cognitive behavioural therapy and graded exercise therapy in a recent trial, but are likely to experience less improvement in physical function.
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.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.
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.
Well, it wasn't a research trial so they probably wouldn't have an easy comparison group to hand.Dolphin said: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)
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).
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.Patients who attend NHS specialist CFS/ME services can expect similar improvements in fatigue, anxiety and depression to participants receiving cognitive behavioural therapy and graded exercise therapy in a recent trial, but are likely to experience less improvement in physical function.
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?
AYME's GP leaflet said:‘As a GP for 20 years, I know the vast majority of GPs can manage mild to moderate ME/CFS themselves. However, it takes time and a long initial consultation (we give 90 minutes) can make a huge difference in helping patients understand and interpret their condition, and take responsibility for managing as much as they are able for themselves: http://www.rcpch.ac.uk/ system/files/protected/page/ RCPCH%20CFS.pdf
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.I don't get the impression that such long appointments with doctors (as opposed to other therapists) are the norm in NHS services.
She also said that CFS was time limited so it couldn't still be CFS....................So what is the treatment that is likely to cause such claimed recovery rates? My suspicion is it is a mixture of temporary post viral fatigue and patient dumping. As we discover more and more about possible underlying causes these recovery claims look more and more suspicious and wrong.
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:.................the trigger often is the glandular fever virus - EBV - in fact most "glandular fever" is actually chronic fatigue syndrome. If you get the EBV virus most people are only sick for a couple of weeks, if you're sick for three or four months nowadays we'd call it chronic fatigue syndrome. But other infections trigger it as well.
Very sorry to hear that. So fortunate that you were prepared.She also tried to get the local CAMHS (child and adolescent mental health service) to diagnose pervasive refusal syndrome and lock my child up in a mental health unit but without recording that in letters. (But being forewarned I recorded consultations!).
Indeed.She also said that CFS was time limited.
What's the point of her then.
no mention of brain fog or cognitive issues in the common symptoms.
Can't believe when I was first ill these where the people me and my family turned to for advice.
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.
Again, very familiar!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.
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.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.