Just wanted to add my opinions on the major topics you've outlined
- The criteria used so far (like Fukuda, Reeves) have been so broad as to make the research evidence based on those criteria largely useless: we argue for the recognition of an ME definition, nothing less than the CCC or ICC (as an interim pending further research, and ultimately, ideally, a tighter definition than even the ICC). The definition should include PEM/PENE (operationalised by CPET testing), neurological and immune dysfunction, with testing for known abnormalities mandatory. (Firestormm 4, 50, Slayadragon 5, Daisybell 16, taniaaust 20, ecoclimber 44, Roseblossom 46, 51, Ember 56, 82, Nielk 76)
I agree almost entirely with this point however I'd like to raise the point that going forwards we are likely to find more bio-markers of ME/CFS, it is therefore worthwhile ensuring the definition has room for expansion and it is likely that as time progresses the definition may have to be entirely re-worked.
- ME should be separated out from Chronic Fatigue and 'CFS'. Chronic Fatigue, CFS and ME are separate entities. An ME definition should be based on test abnormalities. CFS should be dropped. Chronic Fatigue isn't relevant to ME. (taniaaust 20,22, bob 42, Lnester7 45, Beaker 71, 72, Nielk 76)
I'm not sure I 100% agree with this, more I believe the name is a topic all in itself and should likely be changed only when sufficient scientific data has been gathered to give the disease a fitting name. Both CFS and ME have problems, given that CFS is too broad a term and seems too much like a waste basket diagnosis and there is no reliable and consistant evidence to support the 'encephalomyelitis' of ME. A name i've seen discussed numerous times is Myalgic encephalopathy which appears to be more consistant with a disease that is currently classified as a neurological disease.
- The illness we are talking about is not about fatigue. This illness is also not about depression, deconditioning, childhood abuse, somatization, personality disorder, laziness, malingering, hypochondria, or unwellness. (SOC 6, Nielk 8, Sparrow 10, bob 42, ecoclimber 44, Lnester7 45)
Further to the points raised, I'd like to emphasise that many patients became ill very suddenly - leading a normal and healthy life up to this point. This likely causes a lot of distress and upset, however this is the same in any organic disease and does not verify a psychological disease, it merely verifies the distress such disability can cause.
- The panelists need to understand how severe the disease can be, and have a definition focusing on the core of the most severely affected. The disease we are talking about is a complex, serious, debilitating, multi system disease which leaves its patients disabled. There is a wide variety of symptoms. Half of patients can't work and a quarter are left bedbound. Panelists need to recognise the varying severities and the impact on patients' lives of the various disability levels. (Sparrow 10, 104, Firestormm 21, Beaker 49, Nielk 76, Ritto 112)
I'm not sure the definition should be built specifically around the most severely effected patients as this could end up discounting ME patients who may not have such a severe degree of disability, however it should emphasise the vast array of disability severities that can occur and how patients can move between these levels very quickly during times of relapse.
- Our presentation should challenge the concept that ME/CFS is a psychological or psychogenic condition and call for such research to be disregarded in relation to the EBM base for ME. We could show examples of past illnesses once thought psychiatric and now known to be physical (eg Ulcers/H. pylori infection, Multiple Sclerosis, Diabetes). Research which describes a putative 'functional disorder' should be ignored and dismissed in relation to ME. (A.B. 34, bob 42, ecoclimber 44, Alex 52)
I think an important point to make here is that among patients and ME experts, both doctors and researchers, there is no doubt that ME is a significantly debilitating organic disease. The point regarding past diseases classed as psychological diseases is a strong one which cannot be understated. Far too often have organic diseases been incorrectly identified as psychological in nature despite lacking research, such events are catastrophic to further research into the condition and past mistakes should not be repeated over and over. There now exists enough research data to support the notion of ME/CFS as a physiological disease.