Request for comments: NDIS (Australian National Disability Insurance Scheme): evidence of permanency of ME/CFS with NHMRC interim guidelines

Hi all,

I'm trying to gather evidence for permanency of ME/CFS.

The health minister says that the NDIA are using the Australia 2002 guidelines. They're are pretty old and 5 years is a long time to wait with little support. I'm using evidence in the guidelines provided by the NHMRC to try provide more up-to-date and better quality evidence than the Australia 2002 guidelines.

I have a coulpe of questions with regards to the evidence below:

1. Does the evidence require any more wait time then the 6 months for the Fukuda criteria to establish permanency?
2. Does the evidence allow someone, who is able to do part time work, to have their condition be permanent?

The main concern I have is the summary in section C of the IOM Beyond CFS/ME, p265 guidelines: "Recovery is a highly variable and generally lengthy process with no standard course of treatment, and some patients’ symptoms may persist indefinitely."

Whereas the best available evidence says there's little or no evidence of recovery.

Please give your assessments on the evidence I've presented below and any suggestions for improvement

Ps. I'll be working on evidence of treatment, and the lack there of, as well. I know that's missing.


*Evidence of Permanency*

The NHMRC has established an advisory committee to advise the CEO on ME/CFS research and clinical guidelines. While the committee is deliberating and the outcome of the CEOs descion is pending the NHMRC has provided "good quality clinical options" on the website that can be used by clinicians (NHMRC ME and CFS Page, 2019).

The committee doesn't provide the RACP CFS Guidelines 2002, the Australian guidelines, directly rather it links to a letter about the guidelines (Larkins and Molesworth, 2002). (Full text: http://www.ahmf.org/g-030602letter.html)

This letter encourages the use of good quality up-to-date evidence by clinicians:

"All clinical guidelines should be viewed as documents that will, in time, require refinement, rewriting and replacement. ...that the investigation and management of a patient's condition must be determined with the assistance of the best and latest information as it emerges and, in all instances, be tailored to the needs of the individual patient." (Larkins and Molesworth, 2002)

One of the guidelines provided by the NHMRC found that, generally, evidence for recovery differs substantially between studies according to IOM Beyond ME/CFS, 2015, p263.

Further the guidelines assess reasons why the evidence differs in this way and identifies ways to establish clearer evidence:

"majority of studies relied on patient self-reports and did not utilize more objective measures of recovery, such as return to work or school- or laboratory-based assessments."

"... Twisk (2014) states that subjective measures cannot dispel the debate regarding identification of full or partial recovery from ME/CFS. Instead, he recommends objective measures to characterize the clinical status and function of a patient before, during, and after treatment interventions to ascertain partial or full recovery." (IOM Beyond ME/CFS, 2015, p263-264)

Reassessing the RACP CFS Guidelines, 2002 with the more objective approach outlined above it is found that the guidelines do refer to changes in work status on pS46. There isn't a reference related to changes in work status on this page so the evidence is likely based on the paper used to identify improvement and recovery rates on pS31, Wilson et al, 1994.

A closer look at the Wilson et al. 1994 paper shows that work status is only assessed on follow-up not at initial assessment and the improvement and recovery rates are derived from patient self reports.

Looking at other guidelines, of the 6 most recent guidelines provided by the NHMRC there are 2 that use more objective assessments to measure recovery and permanency:

• Institute of Medicine– Beyond ME/CFS Redefining an Illness: Report guide for Clinicians (2015)
• International Association for CFS/ME (IACFSME) Chronic Fatigue Syndrome /Myalgic Encephalomyelitis– Primer for Clinical practitioners (2014 ed)

The IACFSME CFS/ME Primer, 2014ed, p26, uses one review paper that assesses changes in work status, Cairns et al. 2005.

Cairns et al. 2005 looks at studies for CFS based on the both the Oxford criteria (Sharpe et al. 1991) and CDC criteria (Fukuda et al. 1994). It also includes studies that research other fatigue states labeled chronic fatigue (CF). No criteria for CF is given and appears to categorise older studies that match a specific database search used in the review.

The section on work status combines study results of CF and CFS and doesn't distinguish between CFS criteria, (Cairns et al. 2005).

Because CFS criteria and other fatigue states are combined, the recovery rates based on changes work status, in the IACFSME CFS/ME Primer, 2014ed, p26, may not be a reliable indicator of recovery for those diagnosed with CFS or, specifically those diagnosed with the Fukuda et al. 1994 criteria.

The IOM guidelines references 4 studies that assess improvement using changes in work status, (IOM Beyond ME/CFS, 2015, p274). Three are based on the Fukuda et al. 1994 definition of CFS (Bombardier and Buchwald, 1995; Tiersky et al., 2001; Andersen and colleagues, 2004). The first two studies found little change in work status over time. The third, a 5 year study, found that work disability increased, "indicating no evidence of recovery" (IOM Beyond ME/CFS, 2015, p274).

In summary, studies that use changes in work status to assess recovery are of higher quality than studies based on self reports. A review of recent guidelines provided by the NHMRC, using changes in work status as a measure of recovery, finds little or no evidence of recovery for those diagnosed with the Fukuda et al. 1994, criteria. Those diagnosed with the Fukuda et al. 1994 criteria have a permanent or likely permanent condition.

*Referrences*

Andersen, M. M., H. Permin, and F. Albrecht. 2004. Illness and disability in Danish chronic fatigue syndrome patients at diagnosis and 5-year follow-up. Journal of Psychosomatic Research 56(2):217-229.

Bombardier, C. H., and D. Buchwald. 1995. Outcome and prognosis of patients with chronic fatigue vs chronic fatigue syndrome. Archives of Internal Medicine 155(19):2105-2110.

Cairns R, Hotopf MA. Systematic review describing the prognosis of chronic fatigue syndrome. OccupMed (Oxford, England). 2005 Jan; 55(1):20-31.

Fukuda K, Straus S, Hickie I, Sharpe M, Dobbins J, Komaroff A. The Chronic Fatigue Syndrome: a comprehensive approach to its definition and study. Ann Intern Med 1994;84:118 – 121.

IACFSME(International Association for CFS/ME) CFS/ME (Chronic Fatigue Syndrome /Myalgic Encephalomyelitis)– Primer for Clinical practitioners (2014 ed)

IOM (Institute of Medicine) – Beyond ME/CFS Redefining an Illness: Report guide for Clinicians (2015) https://www.ncbi.nlm.nih.gov/books/NBK274235/

Larkins R and Molesworth S. 2002. Chronic fatigue syndrome clinical practice guidelines. Med J Aust 2002; 177 (1): . || doi: 10.5694/j.1326-5377.2002.tb04640.x

NHMRC ME and CFS (Myalgic Encephalomyelitis and Chronic Fatigue Syndrome) Page, Retrieved 2019-05-04, NHMRC: https://www.nhmrc.gov.au/myalgic-encephalomyelitis-and-chronic-fatigue-syndrome

RACP (Royal Australasian College of Physicians) - CFS (Chronic fatigue syndrome)
Clinical practice guidelines (2002) https://www.mja.com.au/system/files/issues/cfs2_2.pdf

Sharpe MC; Archard LC; Banatvala JE; et al. (February 1991). "A report--chronic fatigue syndrome: guidelines for research". J R Soc Med. 84 (2): 118–21.

Tiersky, L. A., J. DeLuca, N. Hill, S. K. Dhar, S. K. Johnson, G. Lange, G. Rappolt, and B. H. Natelson. 2001. Longitudinal assessment of neuropsychological functioning, psychiatric status, functional disability and employment status in chronic fatigue syndrome. Applied Neuropsychology 8(1):41-50.

Wilson A, Hickie I, Lloyd A, et al. Longitudinal study of outcome of chronic fatigue syndrome. BMJ 1994; 308: 756-759

 

I've added evidence for treatments now and simplified the argument for recovery. Hopefully the argument is strong and more readable too.

NHMRC guideline documents are found on the NHMRC ME and CFS Page.

=Evidence of Permanency

Evidence of permanency has two aspects. First is the likelihood of recovery, ie. how long the illness will last, second the availablily of treatments to cure or improve function. Evidence for these two aspects are treated below.

The National Health and Medical Research Council (NHMRC) has established an advisory committee to advise the CEO of the NHMRC on ME/CFS research and clinical guidelines. While the outcome of the CEOs descion is pending the NHMRC has provided eleven guideline documents, developed by state, national and international organisations, on its website that can be used by clinicians (NHMRC ME and CFS Page, 2019).

For providing evidence on likelihood of recovery and available treatments the six most recent adult guideline documents provided by the NHMRC will be used.

==Likelihood of Recovery

One guideline document found that, generally, evidence for recovery differs substantially between studies (IOM Beyond ME/CFS, 2015, p263).

Further the guideline document assesses reasons why the evidence differs in this way and identifies ways to establish clearer evidence:

"majority of studies relied on patient self-reports and did not utilize more objective measures of recovery, such as return to work or school- or laboratory-based assessments.", "... Twisk (2014) states that subjective measures cannot dispel the debate regarding identification of full or partial recovery from ME/CFS. Instead, he recommends objective measures to ... ascertain partial or full recovery." (IOM Beyond ME/CFS, 2015, p263-264)

Looking at the six guideline documents there are 2 that use more objective assessments to measure recovery:

• Institute of Medicine– Beyond ME/CFS Redefining an Illness: Report guide for Clinicians (2015)
• International Association for CFS/ME (IACFSME) Chronic Fatigue Syndrome /Myalgic Encephalomyelitis– Primer for Clinical practitioners (2014 ed)

The IACFSME CFS/ME Primer, 2014 ed, p26, uses one review paper to assess changes in work status, Cairns et al. 2005. The review found 8-30% of sufferers, identified with and without diagnostic criteria, returned to work (Cairns et al. 2005).

The other guideline document assessing changes in work status references studies identifying sufferers more strictly using diagnostic criteria. IOM Beyond ME/CFS, (2015), p274, uses one study (Vercoulen et al., 1996) based on the Oxford criteria (Sharpe et al. 1991) and three studies (Bombardier and Buchwald, 1995; Tiersky et al., 2001; Andersen and colleagues, 2004) based on the Fukuda criteria (Fukuda et al. 1994) to assess changes in work status. The Fukuda criteria studies are more reliable because it is the stricter of the two and less likely to misdiagnose sufferers (TOP ME/CFS Working Group, 2016. p. 1).

Of the studies that use the Fukuda criteria the first two studies found little change in work status over time (Bombardier and Buchwald, 1995; Tiersky et al., 2001). The third, a 5 year study, found that work disability increased, that is, the study found the amount of work sufferers were able to do decreased (Andersen and colleagues, 2004). The increased work disability indicates "no evidence of recovery" (IOM Beyond ME/CFS, 2015, p274).

==Evidence of Treatments

There are two parts to evidence of treatments related to permanency. First evidence of curative treatment. Second the evidence of treatment that, while not curative, can improve function.

As in the section on, recovery above, six of the most recent adult guideline documents provided by the NHMRC are used for evidence (NHMRC ME and CFS Page, 2019).

===Evidence of Curative Treatment

Of the six most recent guideline documents one offers two effective treatments for ME/CFS: Cognitive Behavioural Therapy (CBT) and Pragmatic Rehabilitation (Arroll and Arroll, 2013. p. 192).

To assess if these treatments are curative a closer look at the referenced papers is needed. The review paper provided as evidence for CBT treatment states there is insufficient evidence for the treatment to be effective over the long term (Price et al. 2008). The study providing evidence for Pragmatic Rehabilitation, similarly, found no evidence of long term effectiveness (Weardon et al. 2010).

Further there is evidence that an aspect of Pragmatic Rehabilitation is problematic. This aspect is called Graded Return to Activities (Arroll and Arroll, 2013. p. 192). Because, for those diagnosed with ME/CFS, "[a]ctivities of daily living use energy and ... are considered exercise" (TOP ME/CFS Working Group, 2016. p. 12), Graded Return to Activities can be considered a type of exercise. Exercise can cause significant deterioration or harm for ME/CFS patients according to objective laboratory studies (Baraniuk, 2018, p. 35; TOP ME/CFS Working Group, 2016. p. 13)

The five other of the six most recent adult guideline documents, provided by the NHMRC, state there are no curative treatments for ME/CFS (Baraniuk, 2018. p. 34; TOP ME/CFS Working Group, 2016. p. 1; IOM, 2015. p. 265; Friedberg et al. 2012. p. 3; Carruthers 2012. p. 1).

===Treatments that Improve Function

Returning to the two studies referenced by Arroll and Arroll (2013) concerning CBT and Pragmatic Rehabilitation, the studies found insufficient and no evidence of functional improvement respectively (Price 2008; Weardon 2010).

Another guideline document states that "[e]arly intervention and appropriate treatment strategies may lessen severity of symptoms", (Carruthers et al. 2012, p. 1). There is no reference given for this statement so it's difficult to know how strong this evidence is - the use of "may" indicates that the evidence is insufficient - and what the appropriate treatments are.

A third guideline asserts that CBT was found to provide functional improvement for patients (TOP ME/CFS Working Group, 2016. p. 18). This finding is in contrast to three other guideline documents that find insufficient or no evidence for treatments in general (including treatments providing functional improvement) (Baraniuk, 2018, p. 35; IOM. 2015. p. 225, 260, 265; Friedberg et al. 2012. p. 6)

==Summary

In summary, the six most recent adult guideline documents provided by the NHMRC were used to assess the likelihood of recovery, curative treatments and treatments that improve function for ME/CFS sufferers.

Guideline documents referencing studies using more objective methods and stricter criteria found recovery rare.

Nearly all guideline documents found no evidence for curative treatments, the remainder found insufficient evidence.

Guideline documents that referenced laboratory evidence on the effect of exercise on ME/CFS sufferers found exercise can cause harm or significant deterioration in sufferers.

Nearly all guideline documents found there was insufficient evidence for treatments that improve function. Furthermore, these same documents found there is insufficient evidence for treatments in general.

Taking the evidence outlined above ME/CFS is likely to be permanent condition.

==References

Andersen, M. M., H. Permin, and F. Albrecht. (2004). Illness and disability in Danish chronic fatigue syndrome patients at diagnosis and 5-year follow-up. Journal of Psychosomatic Research 56(2):217-229.

Arroll, M and Arroll B. (2013). Chronic fatigue syndrome, A patient centred approach to management. Australian Family Physician vol. 42, no. 4

Baraniuk, James N. (2018 ed.). Chronic fatigue syndrome/Myalgic encephalomyelitis. BMJ Best Practice.

Bombardier, C. H., and D. Buchwald. (1995). Outcome and prognosis of patients with chronic fatigue vs chronic fatigue syndrome. Archives of Internal Medicine 155(19):2105-2110.

Cairns R, Hotopf MA. (2005) Systematic review describing the prognosis of chronic fatigue syndrome. OccupMed (Oxford, England). 55(1):20-31.

Carruthers BM, an de Sande MI, Meirleir KL, Klimas NG, Broderick G, Mitchell T, et al. (2012). Myalgic Encephalomyelitis Adult & Paediatric International Consensus Primer

Friedberg F, Bateman L, Bested AC, Davenport T, Friedman KJ, Gurwitt A, Leonard LA, Lapp CW, Stevens SR, Underhill RA, Vallings R. (2012).ME/CFS: A Primer for Clinical Practitioners.Chicago, USA: International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.

Fukuda K, Straus S, Hickie I, Sharpe M, Dobbins J, Komaroff A. (1994) The Chronic Fatigue Syndrome: a comprehensive approach to its definition and study. Ann Intern Med ;84:118 – 121.

IOM (Institute of Medicine). (2015). Beyond Myalgic Encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC: The National Academies Press.

NHMRC ME and CFS (Myalgic Encephalomyelitis and Chronic Fatigue Syndrome) Page. Retrieved (2019-05-04), NHMRC: https://www.nhmrc.gov.au/myalgic-encephalomyelitis-and-chronic-fatigue-syndrome

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

Sharpe MC; Archard LC; Banatvala JE; et al. (1991). "A report--chronic fatigue syndrome: guidelines for research". J R Soc Med. 84 (2): 118–21.

Tiersky, L. A., J. DeLuca, N. Hill, S. K. Dhar, S. K. Johnson, G. Lange, G. Rappolt, and B. H. Natelson. (2001). Longitudinal assessment of neuropsychological functioning, psychiatric status, functional disability and employment status in chronic fatigue syndrome. Applied Neuropsychology 8(1):41-50.

TOP (Toward Optimized Practice) ME/CFS Working Group. (2016). Identification and symptom management of myalgic encephalomyelitis/chronic fatigue syndrome clinical practice guideline.

Vercoulen, J. H. M. M., C. M. A. Swanink, J. F. M. Fennis, J. M. D. Galama, J. W. van der Meer, and G. Bleijenberg. (1996). Prognosis in chronic fatigue syndrome: A prospective study on the natural course. Journal of Neurology, Neurosurgery & Psychiatry 60(5):489-494.

Weardon AJ, Dowrick C, Chew-Graham C, Bentall RK, et al. (2010). Nurse led home based self help treatment for patients in primary care with chronic fatigue syndrome: randomised controlled trial. BmJ 2010;340:c1777.

 

I've added a statement on early intervention and an introduction. I've attached a word document too.

---


Evidence of Permanency for ME/CFS

When ascertaining whether a medical condition is permanent, there are 2 aspects to consider. Firstly, whether there is the likelihood of recovery, ie. how long the illness will last, and secondly, whether there is the availability of effective treatments to cure or improve function. Current research evidence, in addition to recent clinical guidelines stipulated by the ME/CFS advisory committee of the Australian National Health and Medical Research Council (NHMRC), were reviewed and integrated. Findings from research studies and clinical guidelines that use more objective methods and stricter diagnostic criteria found recovery from ME/CFS to be rare. The majority of the clinical guideline documents found no evidence for curative treatments, with the remainder citing insufficient evidence. Guideline documents that referenced laboratory evidence on the effect of exercise on ME/CFS sufferers found exercise can cause harm. There was insufficient evidence for treatments that improve function.
Taking the current evidence that recovery is rare and there are no evidenced based treatments into account, ME/CFS is likely to be a permanent condition.

Evidence Sources

The National Health and Medical Research Council (NHMRC) has established an advisory committee to advise the CEO of the NHMRC on ME/CFS research and clinical guidelines. While the outcome of the CEOs decision is pending, the NHMRC has provided eleven guideline documents, developed by state, national and international organisations. These guideline documents can be accessed on the NHMRC website and are used by clinicians when working with their patients with ME/CFS (NHMRC ME and CFS Page, 2019).
For providing evidence on the likelihood of recovery and available treatments, the six most recent adult guideline documents provided by the NHMRC were reviewed.

Likelihood of Recovery

One guideline document found that, generally, evidence for recovery differs substantially between studies (IOM Beyond ME/CFS, 2015, p263).
Further the guideline document assesses reasons why the evidence differs in this way and identifies ways to establish clearer evidence:
"Majority of studies relied on patient self-reports and did not utilise more objective measures of recovery, such as return to work or school- or laboratory-based assessments.", "... Twisk (2014) states that subjective measures cannot dispel the debate regarding identification of full or partial recovery from ME/CFS. Instead, he recommends objective measures to ... ascertain partial or full recovery." (IOM Beyond ME/CFS, 2015, p263-264)
Looking at the six guideline documents, there are 2 that use more objective assessments to measure recovery:
• Institute of Medicine – Beyond ME/CFS Redefining an Illness: Report guide for Clinicians (2015)
• International Association for CFS/ME (IACFSME) Chronic Fatigue Syndrome /Myalgic Encephalomyelitis – Primer for Clinical practitioners (2014 ed)
The IACFSME CFS/ME Primer, 2014 ed, p26, uses one review paper to assess changes in work status, Cairns et al. 2005. The review found 8-30% of sufferers, identified with and without diagnostic criteria, returned to work (Cairns et al. 2005).
The other guideline document assessing changes in work status references studies identifying sufferers more strictly where participants are included only if their symptoms meet diagnostic criteria. IOM Beyond ME/CFS, (2015), p274, uses one study (Vercoulen et al., 1996) based on the Oxford diagnostic criteria (Sharpe et al. 1991) and three studies (Bombardier and Buchwald, 1995; Tiersky et al., 2001; Andersen and colleagues, 2004) based on the Fukuda diagnostic criteria (Fukuda et al. 1994) to assess changes in work status. The studies, whose participants were selected based on the Fukuda diagnostic criteria, are more reliable because it is the stricter of the two and less likely to misdiagnose sufferers (TOP ME/CFS Working Group, 2016. p. 1).
Of the studies that use the Fukuda diagnostic criteria, the first two studies found little change in work status over time (Bombardier and Buchwald, 1995; Tiersky et al., 2001). The third, a 5 year study, found that work disability increased, that is, the study found the amount of work sufferers were able to do decreased (Andersen and colleagues, 2004). The increased work disability indicates "no evidence of recovery" (IOM Beyond ME/CFS, 2015, p274).

Evidence of Treatments

There are two parts to evidence of treatments related to permanency. First, this involves ascertaining whether there is evidence of curative treatment for ME/CFS. Second, this includes reviewing whether there is evidence of treatment that, while not curative, can improve function.
As above, six of the most recent adult guideline documents provided by the NHMRC are reviewed for evidence (NHMRC ME and CFS Page, 2019).
Evidence of Curative Treatment
A recent guideline document offers two treatments for ME/CFS: Cognitive Behavioural Therapy (CBT) and Pragmatic Rehabilitation (Arroll and Arroll, 2013. p. 192).
To assess if these treatments are curative, a closer look at the referenced papers is needed. The review paper provided as evidence for CBT treatment states there is insufficient evidence for the treatment to be effective over the long term (Price et al. 2008). The study providing evidence for Pragmatic Rehabilitation, similarly, found no evidence of long-term effectiveness (Weardon et al. 2010).
Further there is evidence that an aspect of Pragmatic Rehabilitation is problematic. This aspect is called Graded Return to Activities (Arroll and Arroll, 2013. p. 192). Because, for those diagnosed with ME/CFS, "[a]ctivities of daily living use energy and ... are considered exercise" (TOP ME/CFS Working Group, 2016. p. 12), Graded Return to Activities can be considered a type of exercise. Exercise can cause harm for ME/CFS patients according to objective laboratory studies (Baraniuk, 2018, p. 35; TOP ME/CFS Working Group, 2016. p. 13)
The other 5 most recent adult guideline documents, provided by the NHMRC, state there are no curative treatments for ME/CFS (Baraniuk, 2018. p. 34; TOP ME/CFS Working Group, 2016. p. 1; IOM, 2015. p. 265; Friedberg et al. 2012. p. 3; Carruthers 2012. p. 1).

Treatments that Improve Function

Returning to the two studies referenced by Arroll and Arroll (2013) concerning CBT and Pragmatic Rehabilitation, the studies found no evidence of functional improvement (Price 2008; Weardon 2010).
Another guideline document states that "[e]arly intervention and appropriate treatment strategies may lessen severity of symptoms", (Carruthers et al. 2012, p. 1). There is no reference given for this statement so it's difficult to know how strong this evidence is - the use of "may" indicates that the evidence is insufficient. There is, however, evidence for early intervention outlined in the the IACFSME CFS/ME Primer, (2014 ed.) p26, "late diagnosis or overexertion in the early stages of the illness are likely to lead to deterioration ".
A third guideline asserts that CBT was found to provide functional improvement for patients (TOP ME/CFS Working Group, 2016. p. 18). This finding is in contrast to three other guideline documents that find insufficient or no evidence for treatments in general (including treatments providing functional improvement) (Baraniuk, 2018, p. 35; IOM. 2015. p. 225, 265; Friedberg et al. 2012. p. 6)

Summary

In summary, the six most recent adult guideline documents provided by the NHMRC were used to assess the likelihood of recovery, curative treatments and treatments that improve function for ME/CFS sufferers. The guideline documents referencing studies using more objective methods and stricter diagnostic criteria found recovery to be rare. The majority of guideline documents found no evidence for curative treatments. The remainder found insufficient evidence. Guideline documents that referenced laboratory evidence on the effect of exercise on ME/CFS sufferers found exercise can cause harm. The majority of guideline documents found there was insufficient evidence for treatments that improve function. Furthermore, these same documents found there is insufficient evidence for treatments in general. The evidence outlined above finds recovery rare and that there are no evidenced based treatments therefore ME/CFS is likely to be a permanent condition.

References

Andersen, M. M., H. Permin, and F. Albrecht. (2004). Illness and disability in Danish chronic fatigue syndrome patients at diagnosis and 5-year follow-up. Journal of Psychosomatic Research 56(2):217-229.
Arroll, M and Arroll B. (2013). Chronic fatigue syndrome, A patient centred approach to management. Australian Family Physician vol. 42, no. 4
Baraniuk, James N. (2018 ed.). Chronic fatigue syndrome/Myalgic encephalomyelitis. BMJ Best Practice.
Bombardier, C. H., and D. Buchwald. (1995). Outcome and prognosis of patients with chronic fatigue vs chronic fatigue syndrome. Archives of Internal Medicine 155(19):2105-2110.
Cairns R, Hotopf MA. (2005) Systematic review describing the prognosis of chronic fatigue syndrome. OccupMed (Oxford, England). 55(1):20-31.
Carruthers BM, an de Sande MI, Meirleir KL, Klimas NG, Broderick G, Mitchell T, et al. (2012). Myalgic Encephalomyelitis Adult & Paediatric International Consensus Primer
Friedberg F, Bateman L, Bested AC, Davenport T, Friedman KJ, Gurwitt A, Leonard LA, Lapp CW, Stevens SR, Underhill RA, Vallings R. (2012). ME/CFS: A Primer for Clinical Practitioners.Chicago, USA: International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.
Fukuda K, Straus S, Hickie I, Sharpe M, Dobbins J, Komaroff A. (1994) The Chronic Fatigue Syndrome: a comprehensive approach to its definition and study. Ann Intern Med ;84:118 – 121.
IOM (Institute of Medicine). (2015). Beyond Myalgic Encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC: The National Academies Press.
NHMRC ME and CFS (Myalgic Encephalomyelitis and Chronic Fatigue Syndrome) Page. Retrieved (2019-05-04), NHMRC: https://www.nhmrc.gov.au/myalgic-encephalomyelitis-and-chronic-fatigue-syndrome
Price JR, Mitchell E, Tidy E, Hunot V. (2008). Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database Syst Rev; (3):CD001027.
Sharpe MC; Archard LC; Banatvala JE; et al. (1991). "A report--chronic fatigue syndrome: guidelines for research". J R Soc Med. 84 (2): 118–21.
Tiersky, L. A., J. DeLuca, N. Hill, S. K. Dhar, S. K. Johnson, G. Lange, G. Rappolt, and B. H. Natelson. (2001). Longitudinal assessment of neuropsychological functioning, psychiatric status, functional disability and employment status in chronic fatigue syndrome. Applied Neuropsychology 8(1):41-50.
TOP (Toward Optimized Practice) ME/CFS Working Group. (2016). Identification and symptom management of myalgic encephalomyelitis/chronic fatigue syndrome clinical practice guideline.
Vercoulen, J. H. M. M., C. M. A. Swanink, J. F. M. Fennis, J. M. D. Galama, J. W. van der Meer, and G. Bleijenberg. (1996). Prognosis in chronic fatigue syndrome: A prospective study on the natural course. Journal of Neurology, Neurosurgery & Psychiatry 60(5):489-494.
Weardon AJ, Dowrick C, Chew-Graham C, Bentall RK, et al. (2010). Nurse led home based self help treatment for patients in primary care with chronic fatigue syndrome: randomised controlled trial. BmJ 2010;340:c1777.

 

I've added a note about early intervention in the introduction and the summary.

Evidence of Permanency for ME/CFS
When ascertaining whether a medical condition is permanent, there are 2 aspects to consider. Firstly, whether there is the likelihood of recovery, ie. how long the illness will last, and secondly, whether there is the availability of effective treatments to cure or improve function. Current research evidence, in addition to recent clinical guidelines stipulated by the ME/CFS advisory committee of the Australian National Health and Medical Research Council (NHMRC), were reviewed and integrated. Findings from research studies and clinical guidelines that use more objective methods and stricter diagnostic criteria found recovery from ME/CFS to be rare. The majority of the clinical guideline documents found no evidence for curative treatments, with the remainder citing insufficient evidence. Guideline documents that referenced laboratory evidence on the effect of exercise on ME/CFS sufferers found exercise can cause harm. There was insufficient evidence for treatments that improve function. While, evidence for treatments is generally insufficient, it is notable that there is some evidence that early intervention is likely prevent deterioration.
Taking the current evidence that recovery is rare and there are no evidenced based treatments into account, ME/CFS is likely to be a permanent condition.
Evidence Sources
The National Health and Medical Research Council (NHMRC) has established an advisory committee to advise the CEO of the NHMRC on ME/CFS research and clinical guidelines. While the outcome of the CEOs decision is pending, the NHMRC has provided eleven guideline documents, developed by state, national and international organisations. These guideline documents can be accessed on the NHMRC website and are used by clinicians when working with their patients with ME/CFS (NHMRC ME and CFS Page, 2019).
For providing evidence on the likelihood of recovery and available treatments, the six most recent adult guideline documents provided by the NHMRC were reviewed.
Likelihood of Recovery
One guideline document found that, generally, evidence for recovery differs substantially between studies (IOM Beyond ME/CFS, 2015, p263).
Further the guideline document assesses reasons why the evidence differs in this way and identifies ways to establish clearer evidence:
"Majority of studies relied on patient self-reports and did not utilise more objective measures of recovery, such as return to work or school- or laboratory-based assessments.", "... Twisk (2014) states that subjective measures cannot dispel the debate regarding identification of full or partial recovery from ME/CFS. Instead, he recommends objective measures to ... ascertain partial or full recovery." (IOM Beyond ME/CFS, 2015, p263-264)
Looking at the six guideline documents, there are 2 that use more objective assessments to measure recovery:

• Institute of Medicine – Beyond ME/CFS Redefining an Illness: Report guide for Clinicians (2015)
• International Association for CFS/ME (IACFSME) Chronic Fatigue Syndrome /Myalgic Encephalomyelitis – Primer for Clinical practitioners (2014 ed)

The IACFSME CFS/ME Primer, 2014 ed, p26, uses one review paper to assess changes in work status, Cairns et al. 2005. The review found 8-30% of sufferers, identified with and without diagnostic criteria, returned to work (Cairns et al. 2005).
The other guideline document assessing changes in work status references studies identifying sufferers more strictly where participants are included only if their symptoms meet diagnostic criteria. IOM Beyond ME/CFS, (2015), p274, uses one study (Vercoulen et al., 1996) based on the Oxford diagnostic criteria (Sharpe et al. 1991) and three studies (Bombardier and Buchwald, 1995; Tiersky et al., 2001; Andersen and colleagues, 2004) based on the Fukuda diagnostic criteria (Fukuda et al. 1994) to assess changes in work status. The studies, whose participants were selected based on the Fukuda diagnostic criteria, are more reliable because it is the stricter of the two and less likely to misdiagnose sufferers (TOP ME/CFS Working Group, 2016. p. 1).
Of the studies that use the Fukuda diagnostic criteria, the first two studies found little change in work status over time (Bombardier and Buchwald, 1995; Tiersky et al., 2001). The third, a 5 year study, found that work disability increased, that is, the study found the amount of work sufferers were able to do decreased (Andersen and colleagues, 2004). The increased work disability indicates "no evidence of recovery" (IOM Beyond ME/CFS, 2015, p274).
Evidence of Treatments
There are two parts to evidence of treatments related to permanency. First, this involves ascertaining whether there is evidence of curative treatment for ME/CFS. Second, this includes reviewing whether there is evidence of treatment that, while not curative, can improve function.
As above, six of the most recent adult guideline documents provided by the NHMRC are reviewed for evidence (NHMRC ME and CFS Page, 2019).
Evidence of Curative Treatment
A recent guideline document offers two treatments for ME/CFS: Cognitive Behavioural Therapy (CBT) and Pragmatic Rehabilitation (Arroll and Arroll, 2013. p. 192).
To assess if these treatments are curative, a closer look at the referenced papers is needed. The review paper provided as evidence for CBT treatment states there is insufficient evidence for the treatment to be effective over the long term (Price et al. 2008). The study providing evidence for Pragmatic Rehabilitation, similarly, found no evidence of long-term effectiveness (Weardon et al. 2010).
Further there is evidence that an aspect of Pragmatic Rehabilitation is problematic. This aspect is called Graded Return to Activities (Arroll and Arroll, 2013. p. 192). Because, for those diagnosed with ME/CFS, "[a]ctivities of daily living use energy and ... are considered exercise" (TOP ME/CFS Working Group, 2016. p. 12), Graded Return to Activities can be considered a type of exercise. Exercise can cause harm for ME/CFS patients according to objective laboratory studies (Baraniuk, 2018, p. 35; TOP ME/CFS Working Group, 2016. p. 13)
The other 5 most recent adult guideline documents, provided by the NHMRC, state there are no curative treatments for ME/CFS (Baraniuk, 2018. p. 34; TOP ME/CFS Working Group, 2016. p. 1; IOM, 2015. p. 265; Friedberg et al. 2012. p. 3; Carruthers 2012. p. 1).
Treatments that Improve Function
Returning to the two studies referenced by Arroll and Arroll (2013) concerning CBT and Pragmatic Rehabilitation, the studies found no evidence of functional improvement (Price 2008; Weardon 2010).
Another guideline document states that "[e]arly intervention and appropriate treatment strategies may lessen severity of symptoms", (Carruthers et al. 2012, p. 1). There is no reference given for this statement so it's difficult to know how strong this evidence is - the use of "may" indicates that the evidence is insufficient. There is, however, evidence for early intervention outlined in the the IACFSME CFS/ME Primer, (2014 ed.) p26, "late diagnosis or overexertion in the early stages of the illness are likely to lead to deterioration ".
A third guideline asserts that CBT was found to provide functional improvement for patients (TOP ME/CFS Working Group, 2016. p. 18). This finding is in contrast to three other guideline documents that find insufficient or no evidence for treatments in general (including treatments providing functional improvement) (Baraniuk, 2018, p. 35; IOM. 2015. p. 225, 265; Friedberg et al. 2012. p. 6)
Summary
In summary, the six most recent adult guideline documents provided by the NHMRC were used to assess the likelihood of recovery, curative treatments and treatments that improve function for ME/CFS sufferers. The guideline documents referencing studies using more objective methods and stricter diagnostic criteria found recovery to be rare. The majority of guideline documents found no evidence for curative treatments. The remainder found insufficient evidence. Guideline documents that referenced laboratory evidence on the effect of exercise on ME/CFS sufferers found exercise can cause harm. The majority of guideline documents found there was insufficient evidence for treatments that improve function. Furthermore, these same documents found there is insufficient evidence for treatments in general. While evidence for treatments is generally insufficient it is notable that there is some evidence that early intervention is likely prevent deterioration.
The evidence outlined above finds recovery rare and that there are no evidenced based treatments for patients with ME/CFS therefore ME/CFS is likely to be a permanent condition.
References
Andersen, M. M., H. Permin, and F. Albrecht. (2004). Illness and disability in Danish chronic fatigue syndrome patients at diagnosis and 5-year follow-up. Journal of Psychosomatic Research 56(2):217-229.
Arroll, M and Arroll B. (2013). Chronic fatigue syndrome, A patient centred approach to management. Australian Family Physician vol. 42, no. 4
Baraniuk, James N. (2018 ed.). Chronic fatigue syndrome/Myalgic encephalomyelitis. BMJ Best Practice.
Bombardier, C. H., and D. Buchwald. (1995). Outcome and prognosis of patients with chronic fatigue vs chronic fatigue syndrome. Archives of Internal Medicine 155(19):2105-2110.
Cairns R, Hotopf MA. (2005) Systematic review describing the prognosis of chronic fatigue syndrome. OccupMed (Oxford, England). 55(1):20-31.
Carruthers BM, an de Sande MI, Meirleir KL, Klimas NG, Broderick G, Mitchell T, et al. (2012). Myalgic Encephalomyelitis Adult & Paediatric International Consensus Primer
Friedberg F, Bateman L, Bested AC, Davenport T, Friedman KJ, Gurwitt A, Leonard LA, Lapp CW, Stevens SR, Underhill RA, Vallings R. (2012). ME/CFS: A Primer for Clinical Practitioners.Chicago, USA: International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.
Fukuda K, Straus S, Hickie I, Sharpe M, Dobbins J, Komaroff A. (1994) The Chronic Fatigue Syndrome: a comprehensive approach to its definition and study. Ann Intern Med ;84:118 – 121.
IOM (Institute of Medicine). (2015). Beyond Myalgic Encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC: The National Academies Press.
NHMRC ME and CFS (Myalgic Encephalomyelitis and Chronic Fatigue Syndrome) Page. Retrieved (2019-05-04), NHMRC: https://www.nhmrc.gov.au/myalgic-encephalomyelitis-and-chronic-fatigue-syndrome
Price JR, Mitchell E, Tidy E, Hunot V. (2008). Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database Syst Rev; (3):CD001027.
Sharpe MC; Archard LC; Banatvala JE; et al. (1991). "A report--chronic fatigue syndrome: guidelines for research". J R Soc Med. 84 (2): 118–21.
Tiersky, L. A., J. DeLuca, N. Hill, S. K. Dhar, S. K. Johnson, G. Lange, G. Rappolt, and B. H. Natelson. (2001). Longitudinal assessment of neuropsychological functioning, psychiatric status, functional disability and employment status in chronic fatigue syndrome. Applied Neuropsychology 8(1):41-50.
TOP (Toward Optimized Practice) ME/CFS Working Group. (2016). Identification and symptom management of myalgic encephalomyelitis/chronic fatigue syndrome clinical practice guideline.
Vercoulen, J. H. M. M., C. M. A. Swanink, J. F. M. Fennis, J. M. D. Galama, J. W. van der Meer, and G. Bleijenberg. (1996). Prognosis in chronic fatigue syndrome: A prospective study on the natural course. Journal of Neurology, Neurosurgery & Psychiatry 60(5):489-494.
Weardon AJ, Dowrick C, Chew-Graham C, Bentall RK, et al. (2010). Nurse led home based self help treatment for patients in primary care with chronic fatigue syndrome: randomised controlled trial. BmJ 2010;340:c1777.

 

It can reasonably be argued that it showed that no objective benefits exist at all. If there had been it would have been made the main outcome, as was originally planned. Not just specific benefits, any objective benefits at all. This is the universal standard, only objective benefits are reliable enough to be depended on, and creating exceptions is not justified.

PACE was large enough to confirm that no such benefits are possible with this treatment paradigm. This is the main takeaway.

 

Thanks to everyone who has been working on this, and welcome to the forum @carbonis.dentes - I've been a bit too run down to look through your posts properly, but it seems like you've been making important points.

 

Hi @carbonis.dentes

Would you like me to send you the information ME Australia provided to the NDIS about permanency that we sent after our meeting with them? This was a key topic discussed with them.

Here’s more about the meeting if you are interested:
https://meaustralia.net/2019/03/30/disability-agency-consults-on-me-and-cfs/