Fatigue and MS

[lancelot]

One thing that gives me hope is that drugs (or procedures) can be found useful for conditions without always knowing the "deep"/underlying cause. As I understand, some of the drugs now are useful in relapsing-remitting MS in reducing the number of relapses and hence the long-term prognosis.

.

Yes there are effective drugs and treatments for diseases without a known cause but you must know the pathogenesis or disease process such as with MS and Parkinson's. Diseases like CFS/ME, Fibromyalgia, and autism that have no known cause nor pathogenesis are not only incurable, but you can't even effectively treat it(the root cause or pathogenesis with drugs or otherwise). We are unfortunately stuck with treating just the symptoms.

 

[Dolphin]

Yes there are effective drugs and treatments for diseases without a known cause but you must know the pathogenesis or disease process such as with MS and Parkinson's. Diseases like CFS/ME, Fibromyalgia, and autism that have no known cause nor pathogenesis are not only incurable, but you can't even effectively treat it(the root cause or pathogenesis with drugs or otherwise). We are unfortunately stuck with treating just the symptoms.

Yes, but the way you said it might give the impression that all the millions on MS hasn't led to anything. When it has.

 

[lancelot]

Yes, but the way you said it might give the impression that all the millions on MS hasn't led to anything. When it has.

What i meant was that if 400 million/year of research has not led to the cause of MS then a few million/year may not ever uncover the cause of CFS. All that money for research, however, has uncovered MS's pathogenesis so that effective treatments are available today and a cure in the future for sure. But without knowing the cause there can never be a prevention to a disease. Being able to prevent a disabling or life threatening disease may be even more important than being able to treat that disease.

 

[Cort]

Despite what many people think, MS is not a straightforward disease. According to my research, the key symptom 'sclerosis' is highly problematic. Sclerosis of the brain stem or any other part of the CNS does not unequivocally prove the existence of MS. There are documented cases of autopsies performed on people who never had MS which revealed severe plaques or lesions in the CNS. The difference between CNS and Peripheral Nervous System myelin damage is that the proteins identified as antigens by lymphocytes and macrophages are different. It is the difference between the Schwann Cell and the oligodendrocytes which expresses itself as scelerosis in the CNS and as axonal or demyelination in the PNS.

There you have it- another disorder with subsets....

 

[urbantravels]

HIV causes what looks like a lot of "different" diseases, but we know it as AIDS - acquired immune deficiency syndrome. There's no reason at all why a single pathogen can't cause more than one disease or disease process, and many of them do.

With that said, I do think Dr. Mikovits is much too quick to proclaim that XMRV/MLVs are likely to be at the heart of so many different diseases. It may be true - but we just don't know yet.

 

[Sean]

HIV causes what looks like a lot of "different" diseases, but we know it as AIDS - acquired immune deficiency syndrome. There's no reason at all why a single pathogen can't cause more than one disease or disease process, and many of them do.

With that said, I do think Dr. Mikovits is much too quick to proclaim that XMRV/MLVs are likely to be at the heart of so many different diseases. It may be true - but we just don't know yet.

Agree with this view.

 

[Dx Revision Watch]

Of course, they are trying - as do with fatigue in every disorder - CBT

Some quality of life improvement here - http://www.ncbi.nlm.nih.gov/pubmed/21069585

Here they found some improved mood and fatigue after CBT but no improvement in neuropsychological testing - they could improve how one felt, more quality of life stuff, but could not actually get at the deficits....This reminds me of the MSBR study that found improved quality of life in FM but no improvement in pain

http://www.ncbi.nlm.nih.gov/pubmed/20804245

The UK has just started a huge CBT study on fatigue in MS! Its huge...Its going to employ "energy effectiveness" strategies and CBT (ie pacing strategies?) - "Energy effectiveness approaches have been shown to be effective in reducing MS-fatigue, increasing self-efficacy and improving quality of life"

http://www.ncbi.nlm.nih.gov/pubmed/20553617

CBT helps in this study

Psychosom Med. 2008 Feb;70(2):205-13. Epub 2008 Feb 6.
A randomized controlled trial of cognitive behavior therapy for multiple sclerosis fatigue.
van Kessel K, Moss-Morris R, Willoughby E, Chalder T, Johnson MH, Robinson E.

School of Psychology, University of Southampton, Highfield Southampton, SO17 1 BJ, UK.

Abstract
BACKGROUND: The purpose of this study was to assess the efficacy of cognitive behavior therapy (CBT) as a treatment for multiple sclerosis (MS) fatigue.

METHODS: A randomized controlled design was used where 72 patients with MS fatigue were randomly assigned to eight weekly sessions of CBT or relaxation training (RT). RT was designed to control for therapist time and attention. Participants were assessed before and after treatment, and at 3 and 6 months posttreatment. The primary outcome was the Fatigue Scale. Secondary outcomes included measures of stress, mood, and fatigue-related impairment.

RESULTS: Analysis was by intention-to-treat. A group by time interaction showed that the CBT group reported significantly greater reductions in fatigue across the 8 months compared with the RT group (p < .02). Calculated effect sizes for fatigue from baseline to the end of treatment were 3.03 [95% confidence interval, 2.22-3.68] for the CBT group and 1.83 [95% confidence interval, 1.26-2.34] for the RT group. Results also indicted that both groups showed clinically significant decreases in fatigue defined as fatigue levels equivalent or less than those reported by a non-fatigued healthy comparison group. There were no significant interactions between group and any of the secondary outcome variables, with both groups showing improvements over time on all measures.

Well Cort, if Chalder and Moss-Morris can't fix MS with CBT, Phil Parker and his Licensed Lighting Process practitioners are aleady moving in on MS patients.

http://www.lightningprocess.com/Multiple-Sclerosis-Home/

http://www.lightningprocess.com/Multiple-Sclerosis-How-does-it-work/


This trial (PIs: Chalder and Moss-Morris) is actually being funded by the UK MS Society:


Abstract PubMed: http://preview.ncbi.nlm.nih.gov/pubmed/19698171

PDF full journal text:
http://www.biomedcentral.com/content/pdf/1471-2377-9-45.pdf


Open Access Text:

BMC Neurol. 2009;9:45.
http://www.biomedcentral.com/1471-2377/9/45


Study protocol

Protocol for the saMS trial (supportive adjustment for multiple sclerosis):
a randomized controlled trial comparing cognitive behavioral therapy to
supportive listening for adjustment to multiple sclerosis

Rona Moss-Morris1 , Laura Dennison1 , Lucy Yardley1 , Sabine Landau2 ,
Suzanne Roche3 , Paul McCrone4 and Trudie Chalder5

1 School of Psychology, University of Southampton, Highfield Campus,
Southampton, SO17 1BJ, UK

2 Department of Biostatistics, Institute of Psychiatry, King's College
London, De Crespigny Park, London, SE5 8AF, UK

3 Chronic Fatigue Unit, Maudsley Hospital, Denmark Hill, London, SE5 9RS,
UK

4 Health Service and Population Research Department, Institute of
Psychiatry, King's College London, De Crespigny Park, London, SE5 8AF, UK

5 Department of Psychological Medicine, Institute of Psychiatry, King's
College London, Weston Education Centre, Cutcombe Road, London, SE5 9RJ, UK

author email corresponding author email [or contact forms refer to
website]

BMC Neurology 2009, 9:45doi:10.1186/1471-2377-9-45

The electronic version of this article is the complete one and can be found
online at: http://www.biomedcentral.com/1471-2377/9/45

Received:15 July 2009
Accepted:23 August 2009
Published:23 August 2009

2009 Moss-Morris et al; licensee BioMed Central Ltd.

This is an Open Access article distributed under the terms of the Creative
Commons Attribution License (http://creativecommons.org/licenses/by/2.0),
which permits unrestricted use, distribution, and reproduction in any
medium, provided the original work is properly cited.

 

[pine108kell]

With that said, I do think Dr. Mikovits is much too quick to proclaim that XMRV/MLVs are likely to be at the heart of so many different diseases. It may be true - but we just don't know yet.

With the boldness of her proclamations, there is a decent chance that she has done great harm to her own reputation, WPI and maybe CFS.

 

[urbantravels]

Frankly, the minute she adds autism to the mix, that causes a MAJOR credibility problem. As politicized as autism is, I'd be very, very, VERY sure of my facts before making any claims about causation.

 

[Snow Leopard]

Frankly, the minute she adds autism to the mix, that causes a MAJOR credibility problem. As politicized as autism is, I'd be very, very, VERY sure of my facts before making any claims about causation.

Exactly. Sometimes it is better to keep ones mouth shut - until one has more concrete proof of ones claim.

This trial (PIs: Chalder and Moss-Morris) is actually being funded by the UK MS Society

Note the quite different language used than a CFS trial. Quite sad really how they make out it is curative in CFS, when the 'benefits' are more or less the same as an MS patient.

 

[Cort]

Frankly, the minute she adds autism to the mix, that causes a MAJOR credibility problem. As politicized as autism is, I'd be very, very, VERY sure of my facts before making any claims about causation.

It is scary territory. I noticed that it is not on the leaflet for the next lecture.