MISINFORMATION: Multiple Sclerosis Researched As Psychosomatic Condition?

Seen the following article recently shortly after a sibling participated in a similar study
https://mecfsskeptic.com/psychosomatic-history-of-multiple-sclerosis/
this too though much older - https://forum.mssociety.org.uk/t/mi...research-at-the-heart-of-disability-cuts/9260

shocking and a totally different side to what I was aware I wonder why up and coming studies on this developing treatments like MSinvigorate or COMPASS-MS which is are becoming increasingly common in the UK????
take this one for instance REFUEL-MS and seems relatively new
https://nrtimes.co.uk/lack-of-interventions-offered-to-support-ms-fatigue-msstory/
where the "evidence" they based it on also linked in the article seems to be a paper by the same researchers?
https://journals.sagepub.com/doi/pdf/10.1177/20552173211072274
most interventions seem to be developed from the same group too

Please share any thoughts on this?

 

agreed

 

Is PEM ever a feature of MS?

 

this is how they operate. The 'evidence-base' is created and perpetuated by the same group of people, and it continues to expand from there.
Unfortunately they are often the same people who are regarded as 'experts' and consulted as such by anyone in a position to challenge them. They also have strong connections with the Science Media Centre (SMC).

eta: several of the papers are discussed on this forum; see also 'moss-morris' tag.

eta2: https://www.s4me.info/threads/refuel-ms-cbt-get-digital-intervention-ms-fatigue.34143/

eta3: I think the MS community need to take a long hard look at what's been happening to the ME community for decades and how it is now impacting other LTCs. There are even instances where MS is included in the list of "MUS conditions".

 

That's horrific. Your immune system is literally burning holes in your brain, and it's psychosomatic? Nobody who says that should be practicing medicine or conducting research.

 

I don't understand where the misinformation is located. @ME/CFS Skeptic 's article makes it clear that there was no substantive treatment of MS as a psychiatric disease, although of course individual patients may have been misdiagnosed. The prescribing of psychological and/or exercise therapies to MS patients doesn't involve defining MS as a psychiatric condition, it's merely an acknowledgement that MS has symptoms that 'may' be helped by psychological and/or exercise therapies - whether these therapies are actually any use in MS is a separate issue.

The situation with ME/CFS and psychological and/or exercise therapies is very different to that of MS. In the case of ME/CFS there were unwarranted claims about pathology, treatment effectiveness and cure none of which are currently evident in the MS literature, additionally failure to address PEM and exertional intolerance in ME/CFS meant that studies involving exercise therapies were wholly invalid - to date there is no evidence that PEM or exertional intolerance are substantially present in MS. The lack clear pathophysiology in ME/CFS has left patients especially vulnerable to being labelled with psychiatric illness while PEM creates a special case regarding activity based interventions - neither apply to MS patients.

 

Yes, the situation for the last fifty years has been that MS has been seen as a pathological brain disorder but large numbers of patients with MS get misdiagnosed as having a 'functional' illness rather than MS. I think that situation was probably the same since the late nineteenth century.

 

no, they are not exactly saying that. This is one of the many problems with the whole MUS set up. The definition of what is/are MUS is ambiguous.
see my posts here (which is from an NHS website)
https://www.s4me.info/threads/uk-im...blogs-and-discussion.14318/page-6#post-424909
and here
https://www.s4me.info/threads/uk-im...blogs-and-discussion.14318/page-6#post-425171

and this thread here
Patients with Multiple Sclerosis in Psychotherapy: Processes of Meaning Making and Self Transformation 2020 | Science for ME (s4me.info)

 

They're basically saying that, and trying to be subtle about it.