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Leaflet on paediatric ME/CFS circulated by AYME to 10,000 UK GPs

Dolphin

Senior Member
Messages
17,567
(Not a recommendation)

http://www.ayme.org.uk/news/-/asset...mode=view&p_p_col_id=column-1&p_p_col_count=1

AYME's GP Leaflet
The Role of GPs in Supporting Paediatric M.E./CFS

Take a look at AYME's GP leaflet that has been circulated to 10,000 GP practices in the UK! Next time you see your GP please download, print and take a copy with you!

Click on the preview image to download the full leaflet:

Direct link:
http://www.ayme.org.uk/documents/10..._FIN.pdf/87da9bf3-5b18-4569-b453-5c956790c9c6
 

Dolphin

Senior Member
Messages
17,567
60-80% of individuals with ME/CFS will recover at six months if they have access to specialist treatment compared to around 8% of those who do not have such access. Prognosis relies heavily on GPs taking prompt action.
Not sure of the evidence for this?
I think an early diagnosis can help; not so sure about CFS/ME treatments one gets in UK NHS clinics.
 

Sidereal

Senior Member
Messages
4,856
60-80% of individuals with ME/CFS will recover at six months if they have access to specialist treatment compared to around 8% of those who do not have such access. Prognosis relies heavily on GPs taking prompt action.

WTF? Where are they getting these figures from? What "specialist treatment"? There is no treatment.

All the leaflets explaining our approach and the gentle graded activity programme are available to access and download via websites.

:eek:
 

Tom Kindlon

Senior Member
Messages
1,734
Is there a thread on the Crawley paper on Phoenix Rising? I imagine there is but I couldn't find it on a quick search:

Here's a comment I wrote on the Crawley paper:
http://bmjopen.bmj.com/content/1/2/e000252.abstract/reply#bmjopen_el_156

A bit long-winded. You don't need to read it to comment on the leaflet.

Uncontrolled study proves little about value of therapy received

Tom P. Kindlon, Information Officer (voluntary position)

Irish ME/CFS Association

This paper (1) includes data on two separate (but related) issues: (i) the prevalence of diagnosed and undiagnosed Chronic Fatigue Syndrome/Myalgic Encephalomyelitis ("CFS/ME") (NICE criteria (2)) in children aged 11-16 and (ii) information on how they fared when they received therapy at the CFS clinic. The relative rigour that is brought to the first set of data may mean some may miss that many questions remain about the therapeutic data, which I will now attempt to elucidate.

Ideally what one would want to know is whether there would have been any difference in outcomes if the children had been neither diagnosed nor treated. The criteria used, the NICE criteria (2), which require fatigue and one other symptom for three months or more, are relatively broad - most other criteria for ME and/or CFS are stricter i.e. they require more symptoms (3-9). A systematic review looking at the prognosis of chronic fatigue and chronic fatigue syndrome found that as the criteria got more stringent, the prognosis worsened (10). A Dutch natural course study found that less fatigue improved the prognosis of CFS (11). A US team noted that CFS patients with higher levels of physical functioning were more likely to report recovery at follow-up (12). This suggests the possibility that the group diagnosed because of the surveillance, who had less severe fatigue and better physical functioning, might have a better prognosis than clinic attenders i.e. data from the latter should not necessarily be extrapolated to the former without adjustment for their less severe illness. The prognosis for many adolescents with CFS is good (13-14).

However, despite these difficulties in estimating the prognosis of patients if they had been given neither a diagnosis nor treatment, I'm inclined to think it is better to give a diagnosis based on existing data. A Centers for Disease Control and Prevention (CDC) study suggested that a delayed diagnosis appeared to be a risk factor for poor prognosis, prompting them to launch a multi-million dollar awareness and education campaign aimed at both clinicians and the general public (15). A study in the UK found that a longer time to diagnosis significantly increased the chances that a person would be severely affected [i.e. it compared those who were mildly affected and those who were severely affected (omitting those who could not easily be classified in either group) and found, even after adjustments, that the time to diagnosis was greater for the severely affected group than the more mildly affected group] (16).

So the more important question in my mind is the value, or otherwise, of therapy received. Unfortunately we don't get that much quantitative data on this. We are told information about children being "fully recovered" without information about how this was defined or indeed who decided they were fully recovered (e.g. clinician, parent, children or a combination of individuals?). An important aspect of this is the number of time points that were used. "CFS/ME" is well-known for often having a relapsing and remitting course, something the CDC found in one of their longitudinal studies (17). Another CDC CFS paper reported (in a study where recovery was self-defined) "at 6 months from first reported recovery, 57% (26/46) of these patients reported that they continued to consider themselves recovered from their fatiguing illness, 28% (13/46) reported a return of their fatigue, and 15% (7/46) had incomplete data on fatigue status following their report of initial recovery" (18). A US paediatrician followed some of his ME/CFS patients into adulthood. In one study, ten persons who considered themselves "recovered" or "nearly recovered" (at the time of the assessment) were given questionnaires to assess health status and compared to healthy adults (19). Half of the "recovered" subjects would be considered ill with CFS based upon the disability requirements of the CDC empiric definition of CFS (a broad definition) (20), and all "recovered" subjects had significant somatic symptoms.

The question of whether patients should be treated, or whether simply diagnosing at this time might be better, is important given the therapies in question: Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT). I recently published a paper (21) looking at the reporting of harms for GET and CBT (and in particular the form of CBT based on scheduling graded activity, the form recommended by the NICE guidelines to which the clinic adheres (22)). Reporting of harms in RCTs of these therapies has been recognised as being poor by Cochrane Reviews on both therapies along with the systematic review on which the NICE guidelines were based (22- 25). As they are non-pharmacological interventions, no yellow card facility exists for reporting adverse events. In this scenario, data from surveys may be particularly important: a review of 10 surveys I collated found 51% of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health while 20% of respondents (range 7-38%, n=1808, 5 surveys) reported similar results for CBT (21). This should raise serious questions about the use of these therapies, particularly on individuals who haven't presented themselves to their doctors but have been picked up by surveillance.

As I said, the information on efficacy in this study (1) is far from ideal given it's uncontrolled. The authors claim the "PACE trial provided strong evidence that these treatments are moderately effective in adults" (1,26). However, this statement is based on subjective outcome measures and previous studies of therapies testing graded activity protocols for CFS have shown that, despite reporting improvements over a control group (27), or over time (28), individuals may not have improved when activity (as measured by actometers) are used as the outcome measure. If one looks at the most objective measure of functioning that has so far been reported in the PACE Trial, the 6 minute walk test (6MWT), there was no difference between the CBT and control group (26). Following adjustment, the GET group did increase by 35 metres over the control group but a final result of only 379m is more like the result of a spavined older adult than the 644m that population norms predict for the participants in the PACE Trial (adults of average age 39 year old adults, 77% of whom are female) (21,26).

So, in conclusion, I'm inclined to believe this study suggests the need for a greater awareness of how prevalent "CFS/ME" can be amongst adolescents. However, whether they should then routinely be treated with CBT and/or GET is still open for debate.

References:

(1) Crawley EM, Emond AM, Sterne JA. Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics. BMJ Open. 2011 Dec 12;1(2):e000252. Print 2011.

(2) NICE. Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy); Diagnosis and Management. CG53. London: National Institute for Health and Clinical Excellence (NICE), 2007.

(3) Carruthers B, Jain A, de Meirleir K, Peterson D, Klimas N, Lemer A, et al.: Myalgic encephalomyelitis/chronic fatigue syndrome: clinical working case definition, diagnostic and treatment protocols. J Chronic Fatigue Syndrome 2003;11(1):7-33

(4) Jason LA, Bell DS, Rowe K, Van Hoof ELS, Jordan K, Lapp C, Gurwitt A, Miike T, Torres-Harding S, De Meirleir K. & IACFS. A pediatric case definition for ME/CFS. J Chronic Fatigue Syndr. 2006;13(2/3):1-44.

(5) Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine. 1994;121:953-959.

(6) Holmes GP, Kaplan JE, Gantz NM, et al. Chronic fatigue syndrome: a working case definition. Ann Intern Med. 1988 Mar;108(3):387-9.

(7) Jason LA, Evans M, Porter N, et al. The development of a revised Canadian Myalgic Encephalomyelitis-Chronic Fatigue Syndrome case definition. American Journal of Biochemistry and Biotechnology. 2010:6;120 -135.

(8) Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell T, Staines D, Powles AC, Speight N, Vallings R, Bateman L, Baumgarten-Austrheim B, Bell DS, Carlo-Stella N, Chia J, Darragh A, Jo D, Lewis D, Light AR, Marshall-Gradisbik S, Mena I, Mikovits JA, Miwa K, Murovska M, Pall ML, Stevens S. Myalgic encephalomyelitis: International Consensus Criteria. J Intern Med. 2011;270:327-38. doi: 10.1111/j.1365-2796.2011.02428.x. Epub 2011 Aug 22.

(9) Jason LA, Damrongvachiraphan D, Hunnell J, Bartgis L, Brown A, Evans M, Brown M. Myalgic Encephalomyelitis: Case definitions. Autonomic Control of Physiological State and Function. 2012. 1, 1-14. doi:10.4303/acpsf/K11060. Available at: http://www.ashdin.com/journals/ACPSF/K110601.pdf Accessed Dec. 30, 2011.

(10) Joyce J, Hotopf M, Wessely S. The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review. QJM. 1997 Mar;90(3):223 -33.

(11) Vercoulen JH, Swanink CM, Fennis JF, Galama JM, van der Meer JW, Bleijenberg G. Prognosis in chronic fatigue syndrome: a prospective study on the natural course. J Neurol Neurosurg Psychiatry. 1996 May;60(5):489- 94.

(12) Pheley AM, Melby D, Schenck C, Mandel J, Peterson PK: Can we predict recovery in chronic fatigue syndrome? Minnesota Medicine 1999, 82(11):52-6.

(13) Rimes KA, Goodman R, Hotopf M, Wessely S, Meltzer H, Chalder T. Incidence, prognosis, and risk factors for fatigue and chronic fatigue syndrome in adolescents: a prospective community study. Pediatrics. 2007 Mar;119(3):e603-9.

(14) Katz BZ, Shiraishi Y, Mears CJ, Binns HJ, Taylor R. Chronic fatigue syndrome after infectious mononucleosis in adolescents. Pediatrics. 2009 Jul;124(1):189-93.

(15) Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart G, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC. Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas. Archives of Internal Medicine 2003;163:1530-1536.

(16) Pheby D, Saffron L. Risk Factors for Severe ME/CFS. Biology and Medicine. 2009;1:50-74.

(17) Nisenbaum R, Jones JF, Unger ER, Reyes M, Reeves WC. A population-based study of the clinical course of chronic fatigue syndrome. Health Qual Life Outcomes. 2003 Oct 3;1:49.

(18) Reyes M, Dobbin JG, Nisenbaum R, Subedar N, Randall B, Reeves WC: Chronic fatigue syndrome progression and self-defined recovery: evidence from CDC surveillance system. Journal of Chronic Fatigue Syndrome 1999 5(1):17-27.

(19) Bell DS, Bell DE. Definition of recovery in Chronic Fatigue Syndrome. The Journal of IiME. 2010. 4 (1) 23-27

(20) Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L, Papanicolaou DA, Unger ER, Vernon SD, Heim C. Chronic fatigue syndrome- -a clinically empirical approach to its definition and study. BMC Med. 2005;3:19.

(21) Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111. http://www.iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx

(22) NICE. Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy); Diagnosis and Management. CG53. London: National Institute for Health and Clinical Excellence (NICE), 2007.

(23) Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database Syst Rev. 2008;(3):CD001027.

(24) Edmonds M, McGuire H, Price J. Exercise therapy for chronic fatigue syndrome. Cochrane Database Syst Rev. 2004;(3):CD003200.

(25) Chambers D, Bagnall AM, Hempel S, Forbes C. Interventions for the treatment, management and rehabilitation of patients with chronic fatigue syndrome/myalgic encephalomyelitis: an updated systematic review. J R Soc Med. 2006;99:506-20. Review.

(26) White P, Goldsmith K, Johnson A, et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 2011;377:823e36.

(27) Wiborg JF, Knoop H, Stulemeijer M, Prins JB, Bleijenberg G. How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity. Psychol Med. 2010;40:1281 -1287.

(28) Friedberg F, Sohl S. Cognitive-behavior therapy in chronic fatigue syndrome: is improvement related to increased physical activity? J Clin Psychol. 2009;65:423-42.

Conflict of Interest:

I am Information Officer of the Irish ME/CFS Association. All my work for the Association is voluntary (i.e. unpaid)
 

Dolphin

Senior Member
Messages
17,567
There are four barriers to recovery GPs commonly see:
failing to anchor sleep – patients should try to get up at the same time every day including weekends, and not oversleep: http://www.ayme.org.uk/sleeping-well
Not convinced of this. If patients are going to school during the week, they're probably getting up around 6:30-8 am. I'm not sure of any evidence that patients should be forced up at such a time at weekends.
 
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Dolphin

Senior Member
Messages
17,567
‘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
I don't get the impression that such long appointments with doctors (as opposed to other therapists) are the norm in NHS services.
 

Effi

Senior Member
Messages
1,496
Location
Europe
There are four barriers to recovery GPs commonly see:
failing to anchor sleep – patients should try to get up at the same time every day including weekends, and not oversleep: http://www.ayme.org. uk/sleeping-well
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.
And again the stupid 'sleep hygiene' argument. Useless. I tried it. It changed NOTHING for me. I wish they stopped promoting this as anything of any value. They're making parents of pwme feel guilty about their kids not getting restful sleep. As if they're not feeling bad enough already. ugh.

PS: @Dolphin the ayme link in your post has a space too many. (Right now it links to a blog website commercial ;) )
 

Dolphin

Senior Member
Messages
17,567
Somebody has alerted me to this reference (in tiny print) at the bottom
Crawley EM, Emond AM, Sterne JAC. Unidentified Chronic Fatigue Syndrome (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics. BMJ Open 2011;1:e000252. doi:10.1136/bmjopen-2011-000252
It's an open access paper: http://bmjopen.bmj.com/content/1/2/e000252.full
The group picked up by surveillance had an average SF-36 physical function score of 77.5 (SD: 19.5).
Most of these would then have had normal physical functioning according to the PACE Trial authors before they went to the clinics.

They were missing school so it is good that 12 out of the 23 did get back to full-time school (they had to be missing >20% of school before this). But a lot of them would likely have got back to school full-time anyway or if they had just got a diagnosis.
 

Dolphin

Senior Member
Messages
17,567
60-80% of individuals with ME/CFS will recover at six months if they have access to specialist treatment compared to around 8% of those who do not have such access. Prognosis relies heavily on GPs taking prompt action.
WTF? Where are they getting these figures from? What "specialist treatment"? There is no treatment.
Not sure where the 8% figure is from. I just re-read Crawley et al. (2011) and it's not from that.
 
Messages
13,774
60-80% of individuals with ME/CFS will recover at six months if they have access to specialist treatment compared to around 8% of those who do not have such access. Prognosis relies heavily on GPs taking prompt action.

I don't see how that really strong claim can be justified. The whole leaflet is embarrassing: it seems written to drum up business for specialist services rather than help patients.

Just including this section here because there were teasers for it above:

There are four barriers to recovery GPs commonly see:

• failing to anchor sleep – patients should try to get up at the same time every day including weekends, and not oversleep:
http://www.ayme.org.uk/sleeping-well

• spending too much so-called ‘relaxation time’ staring at screens etc.

• severe underlying anxiety – although this is understandable because patients are so unwell, the lack of recognition of their illness and frequent bullying from peers and professionals

• severe and sudden onset of the illness – which requires immediate referral to a specialist paediatrician
 

Sean

Senior Member
Messages
7,378
60-80% of individuals with ME/CFS will recover at six months if they have access to specialist treatment compared to around 8% of those who do not have such access.

Nothing in the scientific literature justifies this shabby dangerous assertion. It is a shameless lie.

These people really are prepared to trash our lives just to avoid facing the truth about their grotesque incompetence.

:mad:
 
Messages
15,786
What a bunch of useless, WRONG, and condescending bullshit.

AYME is now officially a propaganda machine for psychobabblers, with no concern at all for the well-being of anyone with ME. Esther Crawley is an abusive fraud and should not be anywhere near anything involving ME, children, or any other vulnerable patients.

With charities like these supposedly on our side, who needs enemies?
 
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Messages
15,786
AYME has an email address in their contact info: info@ayme.org.uk

It might be a good idea for all of us to share polite and constructive feedback, especially in regards to their factually incorrect statements which are contradicted by research, or unsupported by research.
 

user9876

Senior Member
Messages
4,556
60-80% of individuals with ME/CFS will recover at six months if they have access to specialist treatment compared to around 8% of those who do not have such access.

:mad:
Not sure where the 8% figure is from. I just re-read Crawley et al. (2011) and it's not from that.

Its not clear to me what they are claiming but the usual guidelines say about being ill for 6 months before a diagnosis as there could be other temporary causes. For children the guidelines say 3 months - I never really understood why. So are they just saying that most of the patients that they see and claim have ME/CFS are actually in this temporary illness group that would, if they were adults, be discluded from the diagnosis.
 

Sidereal

Senior Member
Messages
4,856
For children the guidelines say 3 months - I never really understood why.

I presume because a diagnosis of some kind must be made due to state/teachers/social workers pressure on parents to explain their child's absence from school?

So in kids the criteria are fatigue + one other symptom for three months. This group of cases probably includes a vast number of self-limiting post-infectious fatigue states which resolve spontaneously but which serve to inflate the "recovery with specialist treatment" figures. Growing up I knew plenty of kids/teenagers, including my brother and next-door neighbour, who had post-EBV or post-influenza debility for a few weeks or months, who missed school for a month or three, and they all made full recoveries. Their illness had zero in common with mine except for the "severe fatigue" red herring. I doubt that whatever Crawley and her associates did to those kids was in any way causally related to their recovery. On the other hand, their graded exercise "treatment" approach is practically guaranteed to turn the small % of genuine ME cases from mild/moderate to severe/very severe.
 

Cheshire

Senior Member
Messages
1,129
Esther Crawley is an abusive fraud and should not be anywhere near anything involving ME, children, or any other vulnerable patients.

How could anything good be expected from someone promoting the Lightning Process?
This is beyond crap. Crawley has not the slightest sense of moral and intellectual honesty.
 

user9876

Senior Member
Messages
4,556
I presume because a diagnosis of some kind must be made due to state/teachers/social workers pressure on parents to explain their child's absence from school?

So in kids the criteria are fatigue + one other symptom for three months. This group of cases probably includes a vast number of self-limiting post-infectious fatigue states which resolve spontaneously but which serve to inflate the "recovery with specialist treatment" figures. Growing up I knew plenty of kids/teenagers, including my brother and next-door neighbour, who had post-EBV or post-influenza debility for a few weeks or months, who missed school for a month or three, and they all made full recoveries. Their illness had zero in common with mine except for the "severe fatigue" red herring. I doubt that whatever Crawley and her associates did to those kids was in any way causally related to their recovery. On the other hand, their graded exercise "treatment" approach is practically guaranteed to turn the small % of genuine ME cases from mild/moderate to severe/very severe.

Yes I expect that she (because I think this is a leaflet promoting Esther Crawley) claims for those who would recover anyway. To look at the reasonableness of claims for a specialist service it is useful to look at what the service actually does. From my experience Crawley's Bath service basically has an activity colouring chart - I was going to say to initially help with pacing then to basically use a graded activity approach to increase activity but I think there approach is also to try to even out activity rather initially rather than pace in terms of stay inside a variable energy envelope. But its then a service that only does occasional reviews. I found with their activity system that just adapting what counted as activity based on health levels produced a fairly even activity chart - probably not really in the spirit of things but that's how it seemed like the only sensible to operate it.

Crawley has two approaches to those who don't get better. She basically de-lists non-compliant patients (i.e. those who tell her service that what they say is unhelpful).

With us she had a different approach (and I had prior warning of this so I believe it happens to others) where she claimed to have cured my childs CFS with her treatment program but that my child was still ill due to a disssociative disorder due to being ill. She also said that CFS was time limited so it couldn't still be CFS. But then her ego wouldn't allow her to question her original conformation of a diagnosis so she has to claim that is 'cured'. She did say 'there are new symptoms that don't match CFS' but she was misunderstanding what we said as my child told her and the symptoms fitted an ME description anyway. Then she removed my child from her service. 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!).

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.