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  •  The trial was part-funded by the DWP, and was assessing the value of biopsychosocial interventions at the same time as the DWP was using the biopsychosocial model of disability to help justify cuts to disability spending.[2,3] 

    Mansel Aylward, former Chief Medical Officer at the DWP, and a key architect of the last decade's reforms, had helped to secure funding for the trial and sat as an observer on the trial's steering

  • Clear factual inaccuracies underpinning some of these new outcome measures have been left uncorrected, even after they were reported to the trial's researchers.[2,8,12]
  • The support from respected academics was noted by the Tribunal's majority decision: "The identity of those questioning the research, who had signed an open letter or supported it, was impressive."[1] A number of those academics speaking out about the problems with the PACE trial have expressed concern about the PACE researchers' failure to engage with criticism, and this was included in the Tribunal's majority decision as an explanation for why there was a public interest in releasing the requested data: "there is a strong public interest in releasing the data given the continued academic interest so long after the research was published and the seeming reluctance for Queen Mary University [the institution appealing against the order to release anonymised PACE trial data] to engage with other academics they thought were seeking to challenge their findings (evidence of [PACE trial researcher] Professor Chalder)."[1]

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  • You become a purely intellectual thing because you are no longer a physical creature at all.

  • Commissioner is satisfied that QMUL has in place appropriate processes
     
     for review and dissemination of information relating to the PACE trial.

     107. Whilst the Commissioner accepts that the PACE trial and its results are
     of significant interest to the ME/CFS community, he also accepts the
     argument that there is a campaign focussed on attacking and
     attempting to discredit the trial rather than on obtaining useful
     information about this topic.
     108. The Commissioner therefore accepts the argument that this request has
     been submitted as part of an opposition campaign which refuses to
     accept the integrity of the science behind the PACE trial. He therefore
     considers the nature of this campaign has an effect on the purpose and
     value of the request.
Aug 16, 16

"Assuming QMUL doesn't appeal (or its appeal fails) the data then released should allow analysis to see how many people recovered according the the original protocol (ie before the authors moved the goalposts). It's highly unlikely to be anywhere near the 22% claimed by PACE (a figure approvingly repeated in the UK's House of Lords) and should give patients a more accurate estimate of the curative power of CBT and GET.

The State (and taxpayers) ultimately fund clinical research for the benefit of patients, so it's important patients get accurate, reliable information on the effectiveness of any tested treatments. And researchers should not, in my view, go to such lengths to hide their data from scrutiny: it might be in their interests, it's not in the interests of patients. "

  • Assuming QMUL doesn't appeal (or its appeal fails) the data then released should allow analysis to see how many people recovered according the the original protocol (ie before the authors moved the goalposts). It's highly unlikely to be anywhere near the 22% claimed by PACE (a figure approvingly repeated in the UK's House of Lords) and should give patients a more accurate estimate of the curative power of CBT and GET.
     
     The State (and taxpayers) ultimately fund clinical research for the benefit of patients, so it's important patients get accurate, reliable information on the effectiveness of any tested treatments. And researchers should not, in my view, go to such lengths to hide their data from scrutiny: it might be in their interests, it's not in the interests of patients

  • adjusted for demographic characteristics, health behaviors, and health status, including comorbidities.
  • For dementia, adjusted hazard ratios for cumulative anticholinergic use compared with nonuse were 0.92 (95% CI, 0.74-1.16) for TSDDs of 1 to 90; 1.19 (95% CI, 0.94-1.51) for TSDDs of 91 to 365; 1.23 (95% CI, 0.94-1.62) for TSDDs of 366 to 1095; and 1.54 (95% CI, 1.21-1.96) for TSDDs greater than 1095. A similar pattern of results was noted for Alzheimer disease. Results were robust in secondary, sensitivity, and post hoc analyses.
  • The present study sample was limited to participants with at least 10 years of GH health care plan enrollment before study entry to permit sufficient and equal ascertainment of cumulative anticholinergic exposure

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Aug 08, 16

"The 25% (comment, analysis and ramblings)​

Short version: The study provides support for a 25% rate of housebound/bedbound patients, based on a sample of over 500 patients from three different countries. The sample is likely to miss both the least severe and most severe cases, which increases the uncertainty.

An earlier study based on surveys of UK GP practices, likely to be more representative, didn't directly measure housebound status but supports a figure of at least 25%.

There's a group in the UK specifically for the severely-affected (I used to be a member, when I was, and it was a huge help). It's called the 25% Group, the name taken for the proportion of patients either bedbound or housebound. I'd never been able to find peer-reviewed evidence for the 25% figure*, though it seems to be widely accepted and I have no good reason to challenge it. Peer-reviewed, published support for the figure would give it more weight eg in advocacy work - and 25% is a shocking figure.

[* this paper cites a 1990 book co-authored by Dr David Bell, and a 2001 Action for ME membership survey, that I can't access]

But this study new does provide some evidence for a 25% figure, which I thought might be a useful reference
mango said: ↑

Results Findings indicated that the housebound group represented one quarter of the sample,

The actual figure in this study is 128/537=23.8%, ie a quarter.

The study said:

Housebound status. The DSQ includes a measure that asks participants to describe their fatigue/energy related illness.25 Participants that responded either ‘‘I am not able to work or do anything, and I am bedridden,’’ or ‘‘I can walk around the house, but I cannot do light housework,’’ were classified as Housebound. Participants that responded ‘‘I can do light housework, but I cannot work part-time,’’ or indicated more functioning (participating in family responsibilities, working part-time or fulltime) were classified as not housebound.

How representative is the sample of the wider patient population?

OK, so this isn't necessarily a representative sample - and as you can see below there are substantial differences between the samples on average age (35-52), proportion who were still working (10%-37.5%) and those with a post-grad qualification (10%-40%). There are no separate figures for the proportion who were housebound, but presumably differences would broadly reflect employment rates.

DePaul sample (USA), n=216 (39% of the total)
This sample was drawn from adults self-identifying as having CFS, ME, and ME/CFS. In order to accommodate participants unable to attend a clinic, a variety of Institution Review Boardapproved recruitment methods were implemented. These methods included posting on internet forums, visiting support groups, and contacting individuals who had expressed interest in past or future research studies at DePaul.

84% female, mean age 52, 40% had post grad education (so not very representative), 13.5% working part of full time.

Newcastle (UK) clinic sample, n=98
Diagnosed from referrals to a specialist clinic
83% female, mean age 46, 21% post-grad, 37.5% working part or full time

Norway 1, self-managment trial, n=174
Participants in a randomized trial of a CFS self-management program. Participants were recruited from various sources, including physicians, waiting lists for patient education programs, and CFS patient organizations in the communities surrounding Oslo. Participants were required to be at least 18 years old with a diagnosis of CFS by a physician

87% female, mean age 43, 10% post-grad, 10% working part or full time

Norway 2, inpatient and outpatient clinic, n=63
The second Norway sample was composed of inpatients medical and outpatients at a multidisciplinary ME/CFS Center. Clincial diagnosis. Eligible participants were between 18 and 65 years of age

83% female, mean age 35, 11% post-grad, 19% working part or full time

It's likely that clincs miss out on less severe cases, which might never get referred. Self-selected samples like the DePaul convenience one, are similarly likely to underrepresent less severe cases. That could lead to a misleadingly high proportion of severe cases in these samples. On the other hand, many/most bedboud patients won't be able to attend clinics so are effectively excluded from the specialist system as home-visits are virtually non-existent (in the UK at least). So that will lead to undercounting.

As there could be biases both ways (over and undercounting the proportion who are housebound), that adds more uncertainty around the figure, but is no reason to reject it ie this is some evidence, from an international sample of 500+ patients, that supports a 25% figure for the housebound/bedbound.

UK GP study looking at functional impairment (Nacul 2011)
An earlier study in the UK is based on GP practices so is more likely to be representative of the wider patient population. (Though practices were chosen for having GPS who had experience of diagnosing mecfs so weren't entirely representative of the UK population, and diagnosis wasn't independently confirmed by specialist physicians.)
The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers | BMC Public Health | Full Text

While this doesn't measure housebound status, it gives SF36 survey scores, which gives clues.
25% of patients scored 10 or less on the Physical Function subdomain. You get ten points for being able to wash and dress, but not, eg climb a flight of steps or walk a block - even with difficulty. So you would expect all of them to be housebound, especially as some will score less than ten (struggle/can't do personal care). In fact, it may well be more 25%, but you can't tell from the data provided (interquartile range).

The poor level of functioning is supported by (at least) 25% scoring 0 for 'Role Physical', which means physical health problems interfere with everything you do, and 25% (or more) scoring 12.5 (or lower) for Social Functioning, which equates to your health interfering quite a bit/extremely with social activity with friends and family.

(SF-36® Health Survey Scoring Demonstration)
"

  • An expanded Simmaron/CII spinal fluid study with more participants and more testing is underway. Should testing reveal similar findings in the spinal fluid and the blood again, a powerful message would be sent that ME/CFS is a immune disease.

  • Dr Eklund now used the current analysis methods and compared 20 healthy people with 20 other healthy people. In other words, there should not have been any differences -- or, in any case only the five percent that chance provides. In total he made three million comparisons of randomly selected groups with data from 499 healthy persons.

     

    "The differences were considerably greater than five percent, up to 60 percent in the worst case," Dr Eklund says.

     

    This means that the analyses could have shown positive results where there shouldn't have been any, thereby indicating brain activity where there was no activity.

     

    He also analysed the same data set with his more calculation-heavy method and obtained a considerably better correspondence, with differences in the expected five percent of cases.

  • We also analyzed whether enterocyte damage (i.e., I-FABP levels) was associated with the proposed microbial translocation markers LPS, sCD14, and LBP. We found no relationship between I-FABP and
  • Within the microbial community cluster, there appears to be no clear difference in beta-diversity between the ME/CFS group and healthy group using both weighted (Additional file 2: Figure S2a) and unweighted (Additional file 2: Figure S2b) UniFrac distance matrices
  • The overall microbial composition for ME/CFS and controls differed at the phylum and family levels (Fig. 4a, b), although none of these differences were statistically significant after multiple test correction

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  • Physical functioning was significantly better for those allocated to CBT compared with those allocated to APT (mean difference 6·4 [95% CI 0·4–12·4]; p=0·035). However, given the number of comparisons made, this could be a chance finding.

  • Despite scant funding to date, researchers in the field have generated promising leads that throw light on this previously baffling illness. We suggest the key elements of a concerted research programme
  • Study of mechanism therefore remains a key priority.
  • occasionally as during an epidemic: examples include Epstein-Barr virus (EBV), Ross River virus and the bacterium Coxiella burnetii (which causes Q fever)

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  • These little bioreactors use the oxygen we breathe to turn food and drink into energy and to perform over 500 other important chemical reactions in the cell.
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