Editorial: Turning a Corner in ME/CFS Research

nerd

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Authors: Derek F. H. Pheby, Kenneth J. Friedman, Modra Murovska, Pawel Zalewski
Published: 25 September 2021
doi: 10.3390/medicina57101012

Abstract
Pheby et al. said:
This collection of research papers addresses fundamental questions concerning the nature
of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), the problem of disbelief and
lack of knowledge and understanding of the condition among many doctors and the origins of this
problem, and its impact on patients and their families. We report briefly the growing knowledge
of the underlying pathological processes in ME/CFS, and the development of new organizations,
including Doctors with ME, the US ME/CFS Clinical Coalition and EUROMENE, to address aspects
of the challenges posed by the illness. We discuss the implications of COVID-19, which has much in
common with ME/CFS, with much overlap of symptoms, and propose a new taxonomic category,
which we are terming post-active phase of infection syndromes (PAPIS) to include both. This
collection of papers includes a number of papers reporting similar serious impacts on the quality of
life of patients and their families in various European countries. The advice of EUROMENE experts
on diagnosis and management is included in the collection. We report this in light of guidance from
other parts of the world, including the USA and Australia, and in the context of current difficulties
in the UK over the promulgation of a revised guideline from the National Institute for Health and
Care Excellence (NICE). We also consider evidence on the cost-effectiveness of interventions for
ME/CFS, and on the difficulties of determining the costs of care when a high proportion of people
with ME/CFS are never diagnosed as such. The Special Issue includes a paper which is a reminder of
the importance of a person-centred approach to care by reviewing mind–body interventions. Finally,
another paper reviews the scope for prevention in minimizing the population burden of ME/CFS,
and concludes that secondary prevention, through early detection and diagnosis, could be of value.
 
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At @Hip
To complete the contribution of this Special Issue to the management of patients with ME/CFS, Pheby et al., on behalf of EUROMENE, considered the possible role of preventive programs in minimizing the impact of ME/CFS. They considered in detail the economic case for prevention, as well as the possible health benefits. They concluded that primary prevention would be of little benefit, as not enough is known about modifiable risk factors which could be the subject of such programs. The only exception was in the use of agricultural chemicals, in particular organophosphates.
 

Hip

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They concluded that primary prevention would be of little benefit, as not enough is known about modifiable risk factors which could be the subject of such programs.
I think the development of vaccines to target the major viruses linked to ME/CFS would be an effective means of prevention.

Some vaccines present great technological challenges (for example, there are as yet no EBV or HIV vaccines, because of the challenges involved).

But it's generally concluded that the creation of coxsackievirus B vaccines is pretty easy and straightforward, and yet these have still not been developed and rolled out.

As well as substantially reducing the incidence of ME/CFS, a coxsackievirus B vaccine could potentially eliminate type 1 diabetes, and it would likely save tens of thousands of lives each year, because enterovirus infection is linked to triggering sudden fatal heart attacks in the previously healthy.

More info: Coxsackievirus B vaccine appears feasible, and may drastically reduce ME/CFS incidence in future
 
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I sort of like the concept of developing this more comprehensive "term" and the potential for a more coordinated effort to study these syndromes...

which we are terming post-active phase of infection syndromes (PAPIS)

(sad, as organophosphates were a trigger for my life time ME sentence....and would it be so great to stop using so many horrific chemicals which sicken people, but by ignoring it, they keep using these products.)