Fatigue and MS

[Cort]

MS is another of the mysterious fatiguing disorders - so its worthwhile to pay attention to it The take home thing here is that while they did find anxiety and depression those factors were only weakly correlated with fatigue. Like CFS sleep has a complex but intimate association with Fatigue - the sleep factor is there but its hard to figure out.

They actually have a neurological Fatigue index - they are ahead of us there. I would really like to get that.

Its intriguing because its a documented neurological illness that produces fatigue where its not so prominent in other neurological illnesses.....By definition it cannot be 'psychological'. Instead MS must affect some part of the brain that effects fatigue.

Mult Scler. 2010 Dec 6. [Epub ahead of print]
The relationship between fatigue and other clinical features of multiple sclerosis.
Mills RJ, Young CA.

The Walton Centre for Neurology and Neurosurgery, Liverpool, UK.
Abstract

Background: There has been considerable debate regarding the precise relationships between fatigue in multiple sclerosis (MS) and disease-related factors, such as disability, sleep disturbance, depression, age and sex. Existing studies give conflicting information.

Objective: To clarify such relationships in a large cross-sectional study, using a rigorously developed measurement tool which was based on a clear definition of fatigue. Method: A pack containing the Neurological Fatigue Index for MS Summary Scale, the Hospital Anxiety and Depression Scale, the Epworth Sleepiness Scale, the Multiple Sclerosis Impact Scale and questions regarding sleep and demographics was mailed to patients with MS attending two centres in the UK. All scale scores were converted to parametric measures using the Rasch measurement model. Both linear and non-linear relationships were sought.

Results: Data from 635 respondents (52% response) were analysed. Fatigue was strongly related to the impact of MS. Fatigue was worse in those with progressive disease and clearly worsened once ambulation was affected. There was only weak correlation with anxiety and depression. Fatigue was not related to disease duration or patient age. There was an intimate but complex relation between fatigue and sleep. Fatigue levels were minimum at a nocturnal sleep duration of 7.5 h.

Conclusion: Clear relationships were found between fatigue and disability, disease type and sleep. Further physiological enquiry and trials of drug treatment and sleep modulation might be guided by these clinical relationships.

PMID: 21135018 [PubMed - as supplied by publis

 

[oceanblue]

MS is ... intriguing because its a documented neurological illness that produces fatigue where its not so prominent in other neurological illnesses.....By definition it cannot be 'psychological'. Instead MS must affect some part of the brain that effects fatigue.

Yes, it would be fascinating to know what's causing fatigiue with MS and how that relates to ME/CFS. The UK MRC Expert Group has said it wants to look at symptoms/possible pathways that are shared with other illnesses; I'd like to think that MS-fatigue is one of the things they plan to look at.

 

[roma]

MS is another of the mysterious fatiguing disorders - so its worthwhile to pay attention to it The take home thing here is that while they did find anxiety and depression those factors were only weakly correlated with fatigue. Like CFS sleep has a complex but intimate association with Fatigue - the sleep factor is there but its hard to figure out.

They actually have a neurological Fatigue index - they are ahead of us there. I would really like to get that.

Its intriguing because its a documented neurological illness that produces fatigue where its not so prominent in other neurological illnesses.....By definition it cannot be 'psychological'. Instead MS must affect some part of the brain that effects fatigue.

Hey Cort i dunno if you have been following my story here probably not because you probably have too much on your plate, but MS was my first possible diagnosis because of brain demyelination, the girl i was with also told me that the doctors were trying to figure out why she kept fainting, and having seizures and was tired all the time, she told me one of her doctors gave her the MS diagnosis around 2004 but she really never got any treatment or anything and just lately some other doctors were trying to figure out what was wrong with her, also i have been to many MS forums and it seems to me like a lot of MS men sufferers have a swollen tongue with teethmarks around it and also some white thrush, really the most logical explanation for having a swollen tongue is because you have some pathogen in your blood that your spleen is trying to clean also the white thrush means you have a compromised immune system and something is killing your good bacteria that's why yeast grows..also remember that when Dr bell and Elaine De Freitas got together Dr De Freitas was actually looking for a virus in MS sufferers, i mean it all makes sense science does not lie, doctors say "we don't know what causes MS" for some reason the immune system attacks the myelin sheat, really? a much better explanation for this would be, having a virus in your brain that your cytokines are trying to fight and that's what causes brain demyelination and brain lesions and since it's a virus which you can't flush out of the brain it becomes an autoimmune cycle, really for the ME/CFS community would be great if there was more evidence that maybe XMRV could cause MS because that would make it a stronger community because MS seems to be widely more accepted as a real condition then CFS, plus they get almost $400 millions dollars a year in research and CFS only a few millions, i have been doing my part to raise awareness among the MS sufferers i have sent countless messages through Facebook MS fan pages and posted many comments on MS youtube videos, and i have gotten many responses from people that have MS and so far all of them have told me that in fact they have always believed that all their symptoms could only be caused by some virus, so all they really need is more information about how this pathogen works and really they would soon be joining us in the fight...

 

[IamME]

We need more fatigue research and validification of fatigue research and fatigue scales like a hole in the head. When medicine starts researching fatigue in a disease it's a sign of failure (or rarely success) or lack of progress, much in the same way as if they'd start to research "dirtiness" or "poor hygiene". What diseases have seen massive improvements from fatigue research... none. this is where you're fatigue research leads:

http://www.ncbi.nlm.nih.gov/pubmed/17443610

http://en.wikipedia.org/wiki/Treatment_of_multiple_sclerosis#Neurorehabilitation

there is good evidence that specific approaches, such as exercise,[74][75] psychology therapies, particularly cognitive behavioural approaches...

When depression is reduced fatigue also tends to improve, so patients should be evaluated for depression before other therapeutic approaches are used.

You can see pretty much all the same rhetoric there that we see in "CFS" ME/CFIDS "rehabilitation", the difference is that the MS community either don't think it's inappropriate (if so, probably because it isn't) or very different rules are applied.

ME needs to be accepted understood and studied on it's own legitimate terms and not seen through the lens of other illnesses - the exception being serious viral diseases (including viral cardiomyopathy, a disease that hardly going to be improved by wasting time on faigue research). Too often we see ME compared to diseases that already have effective disease modifying drugs meaning they can afford to look at unimportant stuff (like, eg chocolate!).

ME has many more causes of disability than fatigue, and appears to be far, far more acutely exertional in nature than MS which doesn't share the devastating recovery time post-exertion. Exercise doesn't appear to be a cause of relapse in MS, regardless of whether it makes "fatigue" temporarily worse.

If Cort still thinks it's okay for bedbound pwME to be given "stretching exercises" then clearly "fatigue" has failed in elucidating what we're dealing with. What we do need is some proper research on disability and exertional intolerance alonmg with the viral etc stuff we're all expecting and desparately need, togehter with a separatation from the "unexplained fatigue"/"fatigue spectrum", and getting rid of worse-than-useless term "CFS".

 

[Cort]

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.

 

[Cort]

Wow, Roma - so are you kind of an in-betweener??? They are not sure where to put you? I hear that there's alot of grey area in the neurological disorders. Maybe if you have neurological symptoms and they can't put you somewhere you end up in CFS????

 

[Cort]

If Cort still thinks it's okay for bedbound pwME to be given "stretching exercises" then clearly "fatigue" has failed in elucidating what we're dealing with. What we do need is some proper research on disability and exertional intolerance alonmg with the viral etc stuff we're all expecting and desparately need, togehter with a separatation from the "unexplained fatigue"/"fatigue spectrum", and getting rid of worse-than-useless term "CFS".

Cort doesn't know why stretching exercises would be harmful for anyone including people who are bedbound (who would do mild stretching exercises). Cort thinks this because immobility can harm the limbs causing painful problems that are difficult to resolve. Cort does not think or even consider that stretching cures CFS.

Cort agrees with just about everything else in that post. IE - more than just fatigue is going on....didn't know about post-exertional differences (has that been checked?), very interesting that exercise does not cause relapses in MS - Cort is clearly learning something here - which was one reason to put the post up....

Cort thinks fatigue is an important symptom in CFS and a few other diseases and because of that it will and should be studied. Cort also thinks this is a very new area of research - and therefore not much is known.

Cort also thinks the other aspects of CFS should be studied.

We need more fatigue research and validification of fatigue research and fatigue scales like a hole in the head. When medicine starts researching fatigue in a disease it's a sign of failure (or rarely success) or lack of progress, much in the same way as if they'd start to research "dirtiness" or "poor hygiene". What diseases have seen massive improvements from fatigue research... none. this is where you're fatigue research leads:

Cort thinks researchers are studying fatigue in MS because its there and its very severe. Ditto with liver disease and cancer. The kind of severe fatigue we are talking about is not common in other disorders and you won't find it studied in other disorders. Why you would want to equate a severe symptom like that like 'poor hygiene' I don't know.

What diseases have seen massive improvements from fatigue research... none. this is where you're fatigue research leads

What research produces results right away??? Fatigue research is a new field...How good are physicians at treating pancreatic cancer - very poor......so that's where cancer research leads......?? No - this is a very young field. They are going through their CBT stage right now.

 

[Cort]

ME needs to be accepted understood and studied on it's own legitimate terms and not seen through the lens of other illnesses - the exception being serious viral diseases (including viral cardiomyopathy, a disease that hardly going to be improved by wasting time on faigue research). Too often we see ME compared to diseases that already have effective disease modifying drugs meaning they can afford to look at unimportant stuff (like, eg chocolate!).

OF course ME/CFS needs to be studied on its own terms....(????) but are you actually suggesting that the literature of other disorders that have some similarities to it - should not be reviewed or that nothing can be learned from them?

Given the paucity of research on CFS I suggest we should be looking everywhere that we can..... I think we should pour over other diseases that are getting funding for clues and I certainly hope our researchers are.

[

 

[lancelot]

MS seems to be widely more accepted as a real condition then CFS, plus they get almost $400 millions dollars a year in research and CFS only a few millions,

400M for MS and they still can't figure it out? How will they ever figure out CFS with only a few millions?

 

[floydguy]

400M for MS and they still can't figure it out? How will they ever figure out CFS with only a few millions?

One wonders if things don't go forward because there is little reward to do so. Much better for research institutions to milk it doing all these extraneous studies that never get to the root cause of illness.

 

[roma]

400M for MS and they still can't figure it out? How will they ever figure out CFS with only a few millions?

a lot of doctors and reaserches think MS ia caused by a virus, which they haven't proved so far but the WPI has demonstrated that XMRV can cause atyical MS they have tested atypical MS patinets for XMRV and have tested positive, not a big link has been made between XMRV and MS but it has between XMRV and CFS which means somebody finally figured out what could posssibly be causing CFS, so we don't need people to figure this out it's already been done, what we need now is more media attention and more funding to try to come up with good treatments ASAP whether is ARV's or whatever else might work, but we need it now.

 

[lancelot]

a lot of doctors and reaserches think MS ia caused by a virus, which they haven't proved so far but the WPI has demonstrated that XMRV can cause atyical MS they have tested atypical MS patinets for XMRV and have tested positive, not a big link has been made between XMRV and MS but it has between XMRV and CFS which means somebody finally figured out what could posssibly be causing CFS, so we don't need people to figure this out it's already been done, what we need now is more media attention and more funding to try to come up with good treatments ASAP whether is ARV's or whatever else might work, but we need it now.

While i agree XMRV/MLV's has been strongly linked to CFS/ME so far, it still have not been proven to date because of multiple negative studies and non-consensus(ie: blood working group). I am still waiting for the Lipkin study to confirm or not. we don't even have a government approved blood test for CFS/ME yet so how can we all jump on ARV's at this point?

If XMRV is the cause of CFS/ME, it should not be the cause of MS, fibromyalgia, autism, etc. If mikovitz is linking XMRV to half a dozen other diseases, it then points XMRV as another opportunistic pathogen(ie: human herpes viruses1-6) involved in many other diseases and not necesssarily the cause of any of them. HTLV causes adult leukemia, HIV causes AIDS, XMRV causes ?

 

[Dolphin]

Wrong forum

Sorry to be a grump but I think this thread and one or two others should be in:

Other Health News and Research
Find health news/research on another topic that you feel has implications for PWCs? Post it here.
http://forums.aboutmecfs.org/forumdisplay.php?55-Other-Health-News-and-Research

I think it's best to keep this forum for:

Latest Research
Post links to news articles, abstracts, etc about PUBLISHED RESEARCH SPECIFIC TO ME/CFS.

It could easily get over-run if too much other stuff is posted. I like to follow all or nearly all the ME/CFS threads especially if I've read the paper. It's hard work if other papers start get thrown into the mix.

 

[roma]

While i agree XMRV/MLV's has been strongly linked to CFS/ME so far, it still have not been proven to date because of multiple negative studies and non-consensus(ie: blood working group). I am still waiting for the Lipkin study to confirm or not. we don't even have a government approved blood test for CFS/ME yet so how can we all jump on ARV's at this point?

If XMRV is the cause of CFS/ME, it should not be the cause of MS, fibromyalgia, autism, etc. If mikovitz is linking XMRV to half a dozen other diseases, it then points XMRV as another opportunistic pathogen(ie: human herpes viruses1-6) involved in many other diseases and not necesssarily the cause of any of them. HTLV causes adult leukemia, HIV causes AIDS, XMRV causes ?

Lancelot yo do understand that this is a retrovirus? when has a human retrovirus not shown to cause disease? when? you even said HTLV causes leukemia, HIV causes aids, why is it so hard to understand that another retrovirus is never going to be benign or will cause disease for that matter, why is it that cfs patients have many many syptoms that mimic HIV and also brain MRIs tat look like aids MRIs but yet they don't have HIV, and also have many abnormal tests, only a human pathogen would cause these things and most likely a retrovirus, also look up some of the CFS history and you will see how they were these clusters when the first cases were reported, clusters means there's a pathogen infecting people, we don't know what XMRV causes but really you would have to be really naive if you could think a retrovirus won't cause problems, 30 years and billinos of dollars have been spent on HIV research and people still think a retrovirus could be benign and XMRV cannot be an opportunistic patoghen many test have already shown that infects B and t cells which would make you have a compromised immune system, plus all these conitioins that you mentioned are quite similar which makes me think that they all could be linked to the same virus but just like HIV different people and different immnue systems have different responses to it, just look up the symptoms of all these conditions you just mentioned and you will notice that most of the symptoms match, really if you gave CFS symptoms to MS and MS symptoms too CFS it would almost be the same.. a retrovirus that you have in your brain would make your body send cytokines to fight the infection and since you can't flush the virus out of the brain this becomes an autoimmune condition which would result in brain demyelination and brain lesions, HIV,HTLV,MS,and CFS all have brain demyelination and brain lesions why is it so hard to understand that only a similar patoghen could cause these problems.

 

[lancelot]

Lancelot yo do understand that this is a retrovirus? when has a human retrovirus not shown to cause disease? when? you even said HTLV causes leukemia, HIV causes aids, why is it so hard to understand that another retrovirus is never going to be benign or will cause disease for that matter, why is it that cfs patients have many many syptoms that mimic HIV and also brain MRIs tat look like aids MRIs but yet they don't have HIV, and also have many abnormal tests, only a human pathogen would cause these things and most likely a retrovirus, also look up some of the CFS history and you will see how they were these clusters when the first cases were reported, clusters means there's a pathogen infecting people, we don't know what XMRV causes but really you would have to be really naive if you could think a retrovirus won't cause problems, 30 years and billinos of dollars have been spent on HIV research and people still think a retrovirus could be benign and XMRV cannot be an opportunistic patoghen many test have already shown that infects B and t cells which would make you have a compromised immune system, plus all these conitioins that you mentioned are quite similar which makes me think that they all could be linked to the same virus but just like HIV different people and different immnue systems have different responses to it, just look up the symptoms of all these conditions you just mentioned and you will notice that most of the symptoms match, really if you gave CFS symptoms to MS and MS symptoms too CFS it would almost be the same.. a retrovirus that you have in your brain would make your body send cytokines to fight the infection and since you can't flush the virus out of the brain this becomes an autoimmune condition which would result in brain demyelination and brain lesions, HIV,HTLV,MS,and CFS all have brain demyelination and brain lesions why is it so hard to understand that only a similar patoghen could cause these problems.

i absolutely believe an exogenous human retrovirus always causes A severe and/or life threatening disease as i pointed out with HTLV&leukemia and HIV&AIDS. ONE retrovirus causes ONE disease. But, what does XMRV/MLV's cause? Mikovitz is finding XMRV in CFS, fibromyalgia, MS, autism, Lyme disease, Hashimoto's Thyroiditis, depression, reactivity to mold, and cancer. If you believe mikovitz is right, you have to believe that XMRV is an opportunistic pathogen even if it is a retrovirus because it can't possibly cause +9 different/unrelated diseases OR all these diseases have to be the SAME. the latter cannot be because we know most of their pathogenesis and causes do not relate to each other.

Brain demylination and brain lesions is the primary pathogenisis in MS, but is NOT the primary pathogenisis in AIDS, Leukemia, or CFS. although secondary or tertiary brain demylination and lesions can occur in AIDS and Leukemia, this is not at all the root cause or pathogenisis of either diseases. AIDS and Leukemia have completely different causes and pathogenesis to MS and to each other even. your theory to connect MS primary demyelination to CFS, AIDS, and Leukemia is completely flawed and unproven. CFS does not have demyelination nor does it have permanent brain lesions(some have transitory/temporary tiny brain lesions) because if it did have them then it would be called MS not CFS. You are jumping to wild conclusions about linking a virus that causes CFS/AIDS/Leukemia to MS primary demyelination as somehow they are all interelated due to a viral cause and demyelination pathogenesis in the brain. No they are not!

What i'm saying is that XMRV/MLV does cause ONE disease, but we still have to wait for a consensus and further confirmatory studies to tell us that. We cannot jump to wild conclusions, unproven theories, or trying to say that XMRV is the CAUSE of a dozen other diseases( rather it looks like a link to them which means opportunistic much like reactivated opportunistic human herpes viruses 1-6 in other separate diseases including CFS, RA, AIDS, etc).

 

[Cort]

400M for MS and they still can't figure it out? How will they ever figure out CFS with only a few millions?

A dark hole you're going down Lancelot........Turn away! Turn away!

 

[Cort]

This is always the next big question; if XMRV is validated how many other disorders is it going to turn up in? If its a lot - it going to be a passenger; if its restricted to a few similar disorders OK....I would think CFS, FM, mold....MS????? Lyme...??? I really don't know. The autopsy results from SIngh will be interesting....when XMRV shows up, will it show up in organs related to the cause of death or illness during a person's life time?

That should help tell us about XMRV's virulence.

But, what does XMRV/MLV's cause? Mikovitz is finding XMRV in CFS, fibromyalgia, MS, autism, Lyme disease, Hashimoto's Thyroiditis, depression, reactivity to mold, and cancer. If you believe mikovitz is right, you have to believe that XMRV is an opportunistic pathogen even if it is a retrovirus because it can't possibly cause +9 different/unrelated diseases OR all these diseases have to be the SAME.

 

[John Day]

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.

 

[lancelot]

a lot of doctors and reaserches think MS ia caused by a virus, which they haven't proved so far.

If they are spending 400million dollars every year on MS and can't find a virus linked to it, shouldn't that mean there is no virus or that 400M is not enough money to find a virus?

 

[Dolphin]

400M for MS and they still can't figure it out? How will they ever figure out CFS with only a few millions?

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.

Also, if we could get the respect, support, etc MS had, it'd also be good (and help with problems looking for disability payments, maybe non-financial supports, etc).