Petition, change.org: Define "Melvin Ramsay's Myalgic Encephalomyelitis (M.E.)" as own distinct disease from CFS

Far far too many words. I try to be open minded and not picky about petition words being exactly what I would say but as I couldn’t even manage to finish reading it I’m not going to consider signing. Surely the Ramsay advocates can do a better job than this at making their communications accessible to People with ME. Bizarre.
 
Did Ramsay ever say that ME was caused by enteroviruses and only by enteroviruses? And would it only be people with confirmed enterovirus infection who could be deemed to have ME? This looks more like Hyde's version of ME than Ramsay's.
 
The petition references this page as describing a recent ME outbreak in Spain: https://wwwnc.cdc.gov/eid/article/25/1/18-1089_article

It says

We conducted an observational study from January 2016 through January 2017 of patients admitted to a reference pediatric hospital in Madrid, Spain, for neurologic symptoms and enterovirus infection. Among the 30 patients, the most common signs and symptoms were fever, lethargy, myoclonic jerks, and ataxia. Real-time PCR detected enterovirus in the cerebrospinal fluid of 8 patients, nasopharyngeal aspirate in 17, and anal swab samples of 5. The enterovirus was genotyped for 25 of 30 patients; enterovirus A71 was the most common serotype (21/25) and the only serotype detected in patients with brainstem encephalitis or encephalomyelitis. Treatment was intravenous immunoglobulins for 21 patients and corticosteroids for 17. Admission to the pediatric intensive care unit was required for 14 patients. All patients survived. At admission, among patients with the most severe disease, leukocytes were elevated. For children with brainstem encephalitis or encephalomyelitis, clinicians should look for enterovirus and not limit testing to cerebrospinal fluid.
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I then went to see how well the illness experienced by these patients matched with what is generally known about ME.

Outcomes and Variables Associated with More Severe Disease
Median hospital stay was 10 days (IQR 6–14.5 days). Fourteen patients were admitted to the pediatric intensive care unit (PICU) because of decreased consciousness level (9 patients), paresis (1 patient), or automatic nervous system dysregulation (4 patients, among whom 3 exhibited cardiorespiratory failure and required mechanical ventilation and treatment with an inotrope such as milrinone). The median PICU stay was 9.5 days (IQR 1.5–47 days). None of these patients died.

At the time of hospital discharge, 20 children experienced no sequelae, 7 had cerebellar dysfunction that consisted of slightly wide foot placement while walking or slight instability while sitting, 1 had paresis of the right upper limb, and 1 had peripheral facial paralysis. Another patient had acquired brain damage. Follow-up examination at 3 months after hospital admission detected only slight cerebellar alteration in 2 patients and a mild motor deficit with difficulty extending the right upper limb in 1 patient.

Of the patients with autonomic nervous system dysregulation and cardiorespiratory failure, 1 had acquired brain damage requiring a tracheostomy and a nasogastric tube for feeding. At the time of the most recent follow-up examination (June 30, 2018), the patient no longer required mechanical ventilation or the nasogastric tube for feeding.
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There were no deaths and only 2 patients experienced significant sequelae
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It sounds like these patients were seriously ill but improved fairly rapidly, except for 2 which had significant sequelae. Few details are given but it doesn't mention that these patients continued to have a chronic relapsing illness with marked fatiguability which is how Ramsay ME could be summarized. This doesn't really support the petition in my opinion, mainly due to lack of detail.
 
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I politely won't be signing that. IMHO, there is no proof that 'ME is not CFS', other that the tautological approach of saying there is some kind of 'true ME' and defining CFS as 'people diagnosed with ME/CFS who don't have ME'.

If we (rightly) criticise the scientific approach, methods and definitions used by those with a biopsychosocial theory for ME/CFS, we should hold ourselves to the same standard.

(I'll add that if you wanted to portray ME/CFS patients as slightly unhinged with an axe to grind... well, you wouldn't go far wrong with that petition. As so often in this space, it's well-meaning but an own goal)
 
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Londinium said:
I politely won't be signing that. IMHO, there is no proof that 'ME is not CFS', other that the tautological approach of saying there is some kind of 'true ME' and defining CFS as 'people diagnosed with ME/CFS who don't have ME'.

If we (rightly) criticise the scientific approach, methods and definitions used by those with a biopsychological theory for ME/CFS, we should hold ourselves to the same standard.

(I'll add that if you wanted to portray ME/CFS patients as slightly unhinged with an axe to grind... well, you wouldn't go far wrong with that petition. As so often in this space, it's well-meaning but an own goal)
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This explains my position far more eloquently than I could. :)
 
Londinium said:
I politely won't be signing that. IMHO, there is no proof that 'ME is not CFS', other that the tautological approach of saying there is some kind of 'true ME' and defining CFS as 'people diagnosed with ME/CFS who don't have ME'.

If we (rightly) criticise the scientific approach, methods and definitions used by those with a biopsychological theory for ME/CFS, we should hold ourselves to the same standard.

(I'll add that if you wanted to portray ME/CFS patients as slightly unhinged with an axe to grind... well, you wouldn't go far wrong with that petition. As so often in this space, it's well-meaning but an own goal)
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Perfectly put.
 
I agree. We have debated all this at length. I have learned that Ramsay's wisdom lay in understanding an illness that has no specific connection to encephalomyelitis or enteroviruses.

I think this petition hinders the effort to get a clear view of ME. And sadly it fuels the claims of people like Wessely that patients have irrational beliefs. Those irrational beliefs tend to come from physicians with pet theories, and yes physicians probably have more crazy beliefs than patients, but it does not help to pick up on these beliefs when they don't add up.
 
the guy who put this together has been quite active on social media recently. he's sort of jumped in, all guns blazing - can post about mold, brain injury, ME, enteroviruses within a few minutes of each other. without being disrespective, he's getting a bit carried away. we could do without this.

i mean regardless of the motive and content of the petition, the fact it makes no proper reference to disease classification etc. and is simply addressed to NICE officials tells you all you need to know.
 
I've read some of the comments of people who signed.
I really doubt they have read all the stuff the petitioner has posted and are largely signing because they don't like the fact that ME gets 'clubbed in' with 'chronic fatigue'; unfortunately that is not what the petition is about (as far as I can tell but I haven't read it all and don't intend to).
 
None of it is really relevant to NICE anyway, from my cursory read through, as their remit is about diagnosis, treatment and care, not all the stuff about whether it's enteroviruses etc.

Since there is no established biomarker to separate subgroups, and no effective treatment, we are left with clarifying what we mean by PEM, and making sure it is included in the diagnostic criteria, removing GET and CBT, and warning about the potential harm of trying to exercise yourself better, and ensuring patients get the respect, symptomatic treatment and decent care they need.

I share the petitioner's concern about the harm the name CFS has caused, but the rest of the very lengthy document is completely inappropriate for a petition, and very unhelpful. I'm definitely not signing it.
 
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