MS-related cognitive impairment does not respond to rehabilitation. #MSBlog #MSResearch
“In general neurologists would agree that a minority of dementing illnesses are reversible; in particular those that occur in the context of a progressive neurodegenerative disease such as MS. Therefore it is not surprising to see that cognitive rehabilitation did not improve cognitive performance. An interesting observation from this study is that MSers in the intervention group perceived a positive effect of cognitive rehabilitation on their cognition. Is this a the placebo effect? The downside of this observation is that if healthcare managers, or health economists, saw this kind of data they would not fund cognitive rehabilitation programmes for MS. Would you agree with this strategy? Unfortunately, this is the reality of practicing medicine in an age of austerity.”
“The hidden message in this study is that if you let MSers develop cognitive impairment there is little we can do for them. This is why prevention is better than treatment and underpins the highly effective early DMT (HEEDMT) strategy.”
Definition of dementia: Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living, lasting more than six months, not present since birth, and not associated with a loss or alteration of consciousness.
Epub: Mäntynen et al. Neuropsychological rehabilitation does not improve cognitive performance but reduces perceived cognitive deficits in patients with multiple sclerosis: a randomised, controlled, multi-centre trial. Mult Scler. 2013 Jun 26.
BACKGROUND: There is preliminary evidence on the positive effects of neuropsychological rehabilitation on cognition in MS, but the generalisability of the findings is limited by methodological problems.
OBJECTIVE: The aim of the present study was to determine the effects of strategy-oriented neuropsychological rehabilitation on MS.
METHODS: A total of 102 RRMSers with subjective and objective attentional deficits were randomised into an intervention and a control group. Neuropsychological assessments were performed at baseline, at three months immediately after the intervention, and at six months. MSers in the intervention group received neuropsychological rehabilitation once a week in 60-minute sessions for 13 consecutive weeks. The control group received no intervention.
RESULTS: Neuropsychological rehabilitation including computer-based attention and working memory retraining, psychoeducation, strategy learning and psychological support did not improve cognitive performance but had a positive effect on perceived cognitive deficits. The intervention group perceived significantly fewer deficits than the control group both immediately after the intervention and at six months. The personal rehabilitation goals were also well achieved.
CONCLUSIONS: Strategy-oriented neuropsychological rehabilitation did not improve cognitive performance but reduced perceived cognitive deficits in MS.
“The following are the results of our recent dementia survey.”
Other posts on rebranding MS a dementia:
20 Jun 2013
“This issue clearly needs more explanation. Therefore, I will be hosting our first MS Research Webinar next month on this topic. In the webinar I will explain my thinking and motivation behind the proposed rebranding exercise.
14 Jun 2013
Rebranding MS as a Dementia: part 2. “What do you think of this of short animation? It tries to explain the impact of MS on the brain; in the other words the early phases of MS Dementia.” …
17 Jun 2013
Rebranding MS a dementia (3): Cognitive impairment in asymptomatic MS (or RIS). Cognitive impairment may begin before the first attack of MS. #MSBlog #MSResearch “This is an old post that needs more air time. It shows …
12 Jun 2013
“For me the best thing about going to conferences is that it allows you thinking time, and time to interact with like minded colleagues. After my platform presentation on early aggressive treatment several European neurologists …
20 thoughts on “Rebranding MS a dementia (5): neuropsychological rehabilitation did not improve cognitive performance”
My IQ dropped close to 50 pts. Diagnosed in 2007 but,had symptoms since my childhood in the 60s. IQ tested in the 140 range at 5 and 12 and didn't do another testing until 43 (the mega-drop). Major episodes of Aphasia and all sorts of other wonky cognitive issues in between.My ability to think has measurably declined in significant amounts. The decline seems to have occurred in the last 10 years or so. Not sure this occurs in all experiences of MS, but certainly occurred for me. I can consider multiple instances of my course of MS to have met criteria for dementia. I no longer remit – been almost a decade. It should be a consideration – Maybe tracked better than it is currently but my symptoms only include cognitive decline, they don't epitomize it.
This is not an uncommon story. A lot of MSers and MS Healthcare professionals don't mention the cognitive impact of the disease as it sounds so "negative". Without mentioning it how does someone with MS weigh-up the risks of having the disease with the risks and benefits of being on an highly effective treatment? I don't think we should pull our punches. If you have MS you need to know about the disease; warts and all.
Cognitive problems may not occur until 30 years after diagnosis. Why tell a 21 year old they or may not have a cognitive problem. When MS can be accurately diagnosed for each patient then and only then would it be useful. The problem with MS nothing is certain, that is why it is so difficult to test the drugs. Now so many drugs are being prescribed, who knows how the course of the illness would have developed without them.
I can't see the point of highlighting another dreadful aspect of this disease where nothing can be done about it.Early highly effective treatments for newly diagnosed(if NICE play ball) is fantastic news. It's not so good for those who have established disease where this isn't an option. To keep being shown the EDSS scale, asked where I want to die, told I have a dementing disease, doesn't do much for my mind. I'm trying to get on as best as I can. Rather tha listing all the problems, what baout the solutions? What about neuro-protection, repair? With Alemtuzumab liekly to be available int he future, the game has changed. Researchers need to focus on the areas which have so far been neglected. I don't want to die 10-12 years earlier than normal, I don't want to end up bedridden and doubly incontinent, I don't want dementia. I now need researchers to identify solutions – otherwise what's the point of research?
"I can't see the point of highlighting another dreadful aspect of this disease where nothing can be done about it."Surely highlighting this will increase the impetus to do something about it? This is why we have made neuroprotective therapy a major focus in our lab so we can identify new treatment strategies that can hopefully go a long way to preventing cognitive decline.
Where are these so-called neuroprotective therapies? We've got now't in the fight to tackle progressive forms of MS.
If the neuros stop cocking up the trial design it would be quicker but something is brewing mark my word and it ain't a fart.
Re: "… something is brewing mark my word …"Is that in a good way? Can you please elucidate on this matter?
I am gagged…i know makes a change.Did you know i have been seen in an iron maiden t shirt. Does that mean i am a rock god.I also played for England.Yesterday i found out that you are what shirts you wear.Is this weird logic not according some on twitter.
You definitely are a rock god and a science one too 😉
Wouldn't cognitive impairment be reversible in the relapsing-remitting phase? Physical impairment can certainly rebound tremendously. I noticed improvements in my memory and ability to carry a conversation after I had venoplasty.
Theoretically it should be reversible as other forms of disability. But this has not been shown yet. Unfortunately, you can't rely on self-reporting of improvement. This study showed that subjective improvement was not mirrored by objective improvement.
Improving blood flow, oxygenation and flow of cerebrospinal fluid to and from the brain is of little interest to current medical thinking with regards to MS. Particularly where Neuroscience is concerned.If we really want to address Multiple Sclerosis, we need to step away from the current medical obsession of a drugs based cure for everything. Consider skeletal asymmetries, venous malfunctions etc etc and find the physical issue that is triggering immune response. MS isn't an autoimmune caused problem. Autoimmune issues are nothing more than a symptom of underlying physical issues. It's time medicine took it's head out of Pharmacology's backside and started to look for the cause rather than a drug based treatment for symptoms.
RedC220 what planet are you living on? Mars?
So, RedC220, which CCSVI clinic are you shilling for then? I noticed your posts gently 'introducing' yourself at the MSS, but guess what? The people who post on the Everyday Living board have been experienced all the over-priced hype for various clinics and no – one – NO ONE has had great results that have lasted. Now all they have are permanently damaged veins. Go away.
Nice reply Anonymous 11.00 pm.I heartily concur.
RedC220is this post what is known as astroturfing? I struggle with the interweb and would be grateful for any light someone could shed.
Whoops – RedC220 isn't a shill, just a misinformed and very dumb blogger, who copies pages from web forums and other people's blogs, without attribution. She doesn't believe MS exists. She thinks it is due to a misaligned Atlas bone and CCSVI. However, RedC220 has been banned even from thisisms.com – CCSVI central aren't interested in this person's views either. Thisisms.com and the MSS have been informed of her plagiarism, but they aren't interested because she has 1 follower. Yes, just the one. I encountered an astroturfer once. It was in 2009, when the Everyday Living forum at the MSS was bombarded by the evangelistic followers of Low Dose Naltrexone. One enthusiastic poster (who never mentions LDN now, despite writing a book about it) was 'astroturfed' by the owner of the Yahoo LDN group, who 'had the back ' of his friend, because it was well known that the NHS had banned LDN and that all neuros forbade discussion…and so on and on and on.
Yes it is pissy that there was no objective improvement, but don't knock the subjective improvement entirely. I'd bet that those in the intervention group felt better overall, that maybe they felt that their quality of life had improved. That maybe as a result of the rehab sessions they had a better understanding of what was going on in their noggin, they felt more able to work with, and around their cognitive issues.I want to be able to talk about the changes in my cognitive abilities, explore the hows and whys, acknowledge some of the subtleties, rather than just the gross effects. I don't want to be told that just because there isn't any effective treatment we should focus on areas that they can help with (really, my bladder may not be brilliant anymore, but it is under control, and the occasional dribble has far less impact on my quality of life than my new found inability to spell, or my problems with counting out change, or that scary blank look I get that scares the horses when asked an unexpected question, like where is the post office, and I know the incontinence team are lovely, but I don't need to see them). And I don't want people to assume that because I'm talking about my cognitive issues that it means I have now become entirely incompetent. And not knocking those who are good cognitive behaviour therapists, a NHS prescribed 6 sessions of CBT really doesn't match up to being able to talk to a decent neuropsychologist about it all. (Though her initial reaction to the notion of rebranding MS as a dementia was to shut down the conversation, I think because she assumed I would find it upsetting, even though I brought it up.)It is great that there are potentially new and exciting treatments in the pipeline, and that there is the inkling of a shift away from the 'wait and see how bad it gets before we try and do something' attitude. And frustrating as whatever that people are being left behind, but for how many years were PwMS told that pain shouldn't be an issue if you have MS. And how many of us were told that our fatigue was just because you were depressed (and wouldn't having a baby help you with those feelings of finding life hard work….). I want support now, with what is going on with me, and others (and slowly, I'm starting to get some, though I may have to put my hand in my pocket, too). And I want there to be more and better treatment options for people with MS in the future. And if these two objectives conflict a bit, well, we just have to deal with it. But running scared from a technical word, dementia, is not just not helpful, but I think actively damaging. And I think that goes for all the neurodegenerative diseases.(by the way guys, I get the need for Captchas, but those little doo-dads seriously fry my brain)
Great comment; personal and direct. Thanks for taking the time.