Thursday, 20 October 2016

What to you call someone with MS. Making students happy

When you are in the public eye, you can gain either fame or infamy and then we have to put up with abuse. This is usually just sticks and stones/handbags at ten paces stuff, but occasionally it is malicious stuff.

These are the mindless trolls that threaten the future of this particular resource or our participation. 

Trolls have written to our Bosses & the General Medical Council moaning about this and that in the hope that it affects our employment

Some people are after ProfG. 

Was it because he said something?

Who knows, who cares?....Grow up! !!!!!!

However, there has been collateral damage and other people have been roped into the process.

For example someone has been writing to journal editors to question aspects of the validity of a number of papers in an attempt to professionally defame the character of ProfG.  

However, as ProfG is not the senior author of the papers being questioned, the responsibility and defamation is cast onto the corresponding authors, not ProfG. 

One paper that has come in for particular attack has been what do we call an MSer.

Baker D, Pepper G, Yauner F, Giovannoni G. MSer - A new, neutral descriptor for someone with multiple sclerosis.
Mult Scler Relat Disord. 2014;3(1):31-3. 

A certain person wrote to the journal saying they were a journalist
and accused us of this or that. We had to respond to the journal, and gave the very same answers the person had already received when the same information was requested in one of the many Freedom of Information requests sent to the University. So the purpose of the letter was destructive and not information seeking.  

The journal was satisfied with the response and took no further action. This particular person did too many requests and the Queen Mary College eventually treated the requests as being vexatious. 

They refused to answer more FOI requests, meaning that the troll would need to identify themselves as being a real person if they were to appeal this.  They did not. 

One year forward and the same person, is now someone with MS rather than a journalist, and are back at the journal to this time claim that they and some accomplices falsified the data on which the publication was based. They requested that a letter be published exposing their fraud.

The person provided a false address, seemingly linked to a block of flats, that actually did not have a person of that name living in them.....I checked! 

The questions were answered and the journal decided to treat the request as being malicious and declined their request to publish.

Could they have falsified the data in the way that they stated? 

We doubted it, and in doing so they would have had to falsify over 80% of the total survey response to match their claims. The surveys are designed to stop repeated responses from non-malicious people.
However, we found a way that it could be possible to subvert this.

Our reputation has been called into question and if the allegation of the fraud was proved to be true, we would be happy to retract the paper. 

We requested that the University provided legal address and that they investigate these allegations. They did provide legal address, however, as we had not done anything questionable the university did not want to spend resource to investigate this, as the journal was not requesting this. 

So rather than do nothing, we could at least repeat the study, independently of ourselves or get a cohort of people that couldn't be falsified in the way claimed.  

This is what we did and we got responses were obtained from the MS Society Research Network and the MS register, who did and analysed the whole study independent in a totally independent way. NARCOMS also hosted the link to get a non-UK view.

So to answer the troll(s), if they did really falsify the data, they did a good job, and did it in a way that it resembles the answers in all the other surveys, which are largely consistent.

We would like to thank all of you for participating

You do not like CLIENT.

You prefer PERSON WITH 

and PATIENT is neither liked or disliked.

MSer is a marmite (a yeast-based salty spread product that you like or loathe)-term that is liked and disliked. 

"Sufferer" is a marmite term in the UK, but people in the USA are not sufferers and dislike the term.

Why would people like the term sufferer? I can only guess it relates to peoples experience. 

It is the term often used by the media and sometimes by scientists. 

The term MSer was tolerated on the blog, but we realise people are adverse to being labelled by their conditions. 

The term was originally coined by an MSer perhaps at the same time as IBMer was being used for someone using a computer and you can tolerate it with familiarity. 

However to show we listen we will use pwMS in the future and are using this term in our academic outputs.

PATIENT is the term most used by academics, and it is interesting that it comes from the latin word "to suffer" notably patientum-"someone who sufferers"

Can we as a profession change, well the simple answer is yes,! 

Not too long ago (up to the 1970s) doctors were using the medical terms MORON, IDIOT etc. which is part of a scale of mental capabilities. 

If you are a researcher and health care professional and reading this, it would be arrogance not to adopt this, as use of pwMS takes no effort or cost.

No doubt over time peoples preferences change as one term becomes un-PC by Society.  

This study costs nothing but good will and it was part of a student project.

They are very happy to get their first publication. Let's hope many more to come.

CoI: None...But we are Co-Authors. 

This study received no support and the medical student is very happy to get a publication.

How to refer to people with disease in research outputs: The disconnection between academic practice and that preferred by people with multiple sclerosis

©2016. This manuscript version is made available under the CC-BY-NC-ND 4.0 license

Multiple Sclerosis and Related Disorders. DOI: 10.1016/j.msard.2016.09.007

Click for Paper
How do you describe someone you study.
Please Retweet. May help you get a grant
Paper available until 8 December 2016

How to refer to people with disease in research outputs: The disconnection between academic practice and that preferred by people with multiple sclerosis.

David Bakera;  Ananthi Anandhakrishnana; Katie A. Tuite-Daltonb;  Hazel Lockart –Jonesb;  Rodden M. Middletonb;  David V. FordbChristina Crowec;  Gavin Giovannonia

Neuroimmunology Unit, Blizard Institute, Barts and the London, Queen Mary University of London
bCollege of Medicine, Swansea University, Swansea, Wales, United Kingdom
cNorth American Research Committee on Multiple Sclerosis (NARCOMS),  The University of Alabama at Birmingham, Birmingham, Alabama, USA

BACKGROUND: Increasingly, Government and Charity funders require public engagement in research. Invariably these research outputs describe the condition of someone with the disease of interest.  We therefore sought to identify the preferred descriptor of someone with a disease, such as multiple sclerosis (MS) and to determine what descriptors are currently used by academics.
METHODS: Several surveys were undertaken: one from the Research Network of the MS Society (MSSRN), a major MS Charity within the United Kingdom, who are involved in reviewing grant applications, priority setting and research governance (n=146), and surveys from both the United Kingdom MS register (MSR; n=1713) and the North American Research Committee on Multiple Sclerosis (NARCOMS) registry (n=518).  People were asked to rate descriptors of someone affected with MS. These were compared to that used by academic experimenters in basic science and clinical science research papers.
RESULTS: Although the frequency of responses varied between surveys the overall findings showed many consistencies. This included use of person/people with MS (pwMS) as the preferred descriptor for someone with MS for social media and scientific publications. This was the preferred choice in about 55-60% people from the MRS and in over 70% in the NARCOMS and the MSSRN, respectively. Although MSer was the second preferred–choice for use in social media, there was as a large range of preferences from the ‘most-preferred’ to the ‘most-disliked.’ This reflected an earlier survey by UK-based research blogs using the term MSer (n=173). In contrast, pwMS had few ‘dislikes’ and results were skewed towards the ‘liked’ and ‘most-preferred’ choices. Client and sufferer were generally disliked terms, although there was some regional variation in levels of choice. Patient was generally seen as a neutral term that was neither strongly liked nor disliked. However, patient gained more public support for use within scientific publications (~20-25%) compared to social media (~10–15%). This descriptor was however most commonly used (98–99%) within both pre-clinical (searched in 6-month output of pre-clinical autoimmune MS models; n=161) and in clinical publications (specialist MS journals; n=220), whereas pwMS was not reported in over 75% of papers published in some specialised MS journals, and did not appear in the pre-clinical animal studies examined.
CONCLUSION: There is a clear disconnection between preferences by individuals living with MS and current academic practise. As pwMS are increasingly reading primary research publications and are involved in patient and public involvement in research and grant review activities, the sensitivities of lay readers should be considered when writing research outputs.  This issue may affect other diseases and a change in writing style could be adopted to show that we respect the wishes of the people that we study and wish to help.

Multiple sclerosis (MS) is an immune-mediated, demyelinating and neurodegenerative disease of the central nervous system that affects about 2.5 million people worldwide (Compston & Coles 2008). The disease is insufficiently controlled by currently available treatments and therefore people utilize the internet to investigate research and treatments options (Brigo et al. 2014). There is a an increasing will amongst Government and Charity funders of research that there is patient and public involvement (PPI) in research and a strong aspect of public engagement in science. This includes the production of ‘open access’ research outputs, such that people paying for the research have access to the findings. This supports the development of an increasingly knowledgeable number of people with MS, who are reading original academic articles as they try to understand their disease and treatment options. Furthermore, members of the public are involved in review panels for ethics and research grant applications, all of which require a lay summary as part of the funding process.

To find a neutral term that best describes someone with MS, is empowering for people living with the disease, is non-patronizing and does not entrench stereotypes, we performed some surveys centred on web-based questionnaires (n=396) in which MSer was identified (Baker et al. 2014a). In our initial studies, people with MS (pwMS) did not like being called client, which is a ‘politically-correct’ term used by health economists, but also preferred not to be called a patient or an MS sufferer. In contrast pwMS received a good deal of support. The original surveys were from people visiting a United Kingdom (UK)–based, MS research blog ( and ShiftMS (, which is a social media community for young people affected by MS. These sites used the term ‘MSer’, originating from the founders of ShiftMS, and therefore may have influenced the preferences of people taking the surveys. Therefore to examine this is further, different groups of people with MS were surveyed and the results were compared to that used by the academic community.


2.1 Multiple Sclerosis Society Research Network Survey
In consulting with the Queen Mary University of London Research Ethics Committee no personal identifiers were collected as part of this and previous surveys (Baker et al. 2014a). By completing the surveys, participants provided implied consent for publication of results, as indicated by disclaimers. A web link to an anonymous survey was sent, via the Multiple Sclerosis Society in the United Kingdom, to members (n=315) of the MS Society Research Network (MSSRN). This is a PPI network of people personally affected by MS, who are involved in priority setting, reviewing grant applications, governance of the research programme, advisory groups and other ad hoc PPI activities. ( People in the MSSRN survey were asked how someone with MS should be referred to with 5 set options (Client; MSer; Sufferer; Patient; PwMS that were selected previously (Baker et al. 2014a)), and asked to rank these on a 1–5 scale, from most preferred to least preferred.

2.2 UK MS Register
The UK MS Register (MSR) received peer review via MS Society mechanisms and has ethical approval from the South West–Central Bristol Research Ethics Committee (11/SW/0160) as a research database (Ford et al. 2012). Although identifiable information was collected via the MS register, this was only used to create data linkages such that the functioning UK MS Register contains only anonymous data accessed and analysed within a Safe Haven environment, with scrutiny of research outputs before release (Ford et al. 2012; Jones et al. 2014). The survey was performed, hosted and analysed by the UK MS register.

2.3 North American Research Committee on Multiple Sclerosis  registry
North American Research Committee on Multiple Sclerosis (NARCOMS) registry (; Kister et al. 2013) following ethical review by the University of Alabama at Birmingham (UAB) Institutional Review Board, sent the link to the original survey circulated to the MSSRN, to the NARCOMS registry.

2.4 Academic use of descriptors of pwmS.   As part of a previous study [Baker et al. 2014b], 161 primary research papers concerned with experimental autoimmune encephalomyelitis studies, which were published over a six-month period in 2012 had been downloaded [Baker et al. 2014b]. These were analysed for which descriptors were used. In addition the total publication outputs of some MS specialist clinical journals for the same year were analysed. We searched papers in: Multiple Sclerosis and Related Disorders (n=42), Multiple Sclerosis Journal (n=220) and Multiple Sclerosis International (n=23). These were read to determine which descriptors were used.

3.1 The preferential descriptor for someone with multiple sclerosis-The patient perspective
Following surveying the research network of the Multiple Sclerosis Society there were n=146 responses. The vast majority of people (about 70% of preferred responses in MSSRN) preferred the use of pwMS, while client was the least preferred (about 2–3% of the preferred responses) (Table 1; Figure 1). Although MSer was the second choice by the MSSRN for use in social media (Table 1), it was clear this was either a most-liked or disliked term, as also found in a sub-study (n=173) of the original surveys (Baker et al. 2014a) undertaken (Figure 1). In the survey of the MSSRN about 49% of responses selected MSer as a first or second (Preferred) choice, compared to 95% pf responses for pwMS, which was universally preferred, and 11% of the responses for client, which was the least preferred (Figure 1). Similarly 34% of responses that selected MSer were the last and second from last choices (Disliked) compared to 1% for pwMS or 70% for client (Figure 1). Patient was neither really liked (25% of response for patient) or disliked (36% of responses for patient) and most responses (39%) centred on the median preference. However, for use in scientific papers about 48% of the two most-preferred choices liked the use of patient compared to about 18% who disliked the use of patient. Again 96% of the top two responses preferred the use of pwMS and 0% of the two least-preferred responses disliked the use of pwMS. Thus, there were similarities in the overall types of responses in this new survey compared to one of the original surveys (Baker et al. 2014a), which addressed the same questions (Figure 1), although it was clear that pwMS was the preferred choice.

Table1  Descriptors most preferred by People with MS to describe someone with MS

               Most preferred descriptor of someone with multiple sclerosis
MS Blog
    MSS Research Network
 UK MS Register

Anonymous surveys were undertaken via: a MS blog site (n=174. Baker et al. 2014a); the UK MS Society Research Network (n=146); NARCOMS (n=518) and the UK MS Register (n=1731). It was requested that respondents ranked their most preferred descriptor for being referred to in either the social media or within academic media.  In the MS Blog, MSSRN and NARCOMS surveys some responses recorded equal preferences. In the MS register survey, only data from fully competed surveys with a single preference were included in the analysis (n=1582–1618).

Figure 1.  Preferred descriptors used to describe someone with MS

An anonymous survey was undertaken via (a) an MS research blog (Baker et al. 2014a) and (b) the MS Society Research Network. It was requested that respondents ranked the quality of/their most preferred descriptor for being referred to.  The data represent the frequency distribution or each preference on the research blog (n=173) or preference of how to describe someone with MS on Social media (n=111–140). 

To achieve independent replication, the survey was performed, hosted and analysed by the UK MS register. There were a total of 1713 responses to the survey over a two-week period and as per protocol, only completed responses were included in the analysis. Again there was a clear preference (54–58%) for the use of pwMS as a descriptor of someone with MS. Incomplete answers in the other surveys tended to only include 1–3 choices, often with pwMS as the most preferred, and this figure may therefore slightly underestimate the clear preference for use of pwMS. Likewise, again use of client was an infrequently preferred choice (6% of responses) (Table 1. Figure 2). MSer again had some preference for use in the social media (Table 1), but was again found to be a term that was either liked or disliked (Figure 2). Similarly, the use of MS sufferer was either disliked or liked with a trend for the term to be disliked in both social media and the academic literature (Figure 2).  Whilst MSer may lack familiarity and thus account for the wide range of preferences observed (Figure 1, Figure 2), opinion may change as indicated by a more positive view from pwMS about MSer surveyed from sites that use the descriptor (Figure 1). Again, most notably in relation to use for social media, the use of patient was neither liked nor disliked (Figure 2). However, there was a greater preference for the use of patient in scientific publications (Table1; Figure 2). Thus, the trends identified in this large survey reflect those found in the smaller UK–based surveys (Figure 1; Figure 2). 

Figure 2.  Preferred descriptors used to describe someone with MS on the UK MS Register

A survey was undertaken via the UK MS Register. It was requested that respondents ranked their most preferred descriptor for being referred to in either: Social Media or within Academic Publications. The data represent the frequency distribution or each preference from fully completed surveys that used recorded only a single preference (n=1582–1618).

The web link used by the MSSRN was also hosted by the NARCOMS registry. Again, the preferred descriptor was pwMS for use in both social and academic media (n=518; Table 2; Figure 3). Similar to surveys by the MSSRN and MSR, here the preference for use of MSer was wide ranging. Likewise, patient was also neither most liked nor disliked for use in social media, although again use of patient was considered more acceptable in scientific outputs (Table 1; Figure 3). Client again tended to be disliked, although there appeared to be a greater acceptance of this politically-correct term than in the UK-based surveys (Figure 1-3). Likewise, use of the term sufferer suggested some national differences in acceptance of descriptor terms (Figure 3). Sufferer was largely disliked in the North American NARCOMS survey compared to the British MSR survey (Figure 3).  As such, 33.6% of MSR respondents “liked” or “most preferred” the use of sufferer, compared to only 14% of people in North America (P<0.001 Chi-squared Test). The underlying reasons behind this difference require further investigation, however the United Kingdom has poor access to disease modifying treatments (Kobelt & Kasteng 2009) and thus may be more likely to feel that they are suffering. Nevertheless in conclusion, it is clear that pwMS is the universally preferred descriptor of someone with MS for both social media and academic research outputs.

Figure 3.  Preferred descriptors used to describe someone with MS on the NARCOMS registry

An anonymous survey was undertaken via the NARCOMS registry website ( It was requested that respondents ranked their most preferred descriptor for being referred to in either: Social Media or within Academic Publications. The data represent the frequency distribution of each preference (n=454–509).

3.2 The preferential descriptor for someone with multiple sclerosis-Academic use
In an attempt to determine what descriptors MS researchers use (Table 2), we analysed primary research papers concerned with experimental autoimmune encephalomyelitis (EAE) studies (n=161), published over 6 months [Baker et al. 2014b]. We also analysed the total publication outputs of some MS specialist clinical journals for the same year. In these journals we found that 114 pre-clinical, basic science papers about EAE described someone with MS. In the vast majority (98%) of cases, patient was used to describe someone with MS. Additional descriptors were used and MS sufferer or someone suffering from MS was used in 8% of papers describing pre-clinical studies (Table 2). However, this term did not appear in the papers in clinical journals examined (Table 1). Basic scientists sometimes also use MS sufferer, in their grant applications (unpublished observations). However, it is clear that academics largely use patient, as this occurred in 98-99% of published papers (although about a quarter of papers published in clinically-oriented journals used pwMS (Table 2)).  Therefore there is a disconnection between that used by MS researchers and that preferred by pwMS.

Table2  Descriptors used to describe someone with MS in academic papers

  Frequency of descriptor of someone with multiple sclerosis in academic papers
Basic Science Papers
Clinical MS Special Journals
Published papers on pre-clinical studies using animal models of MS (n=114) and papers published in clinically-related, MS-specialist journals (n=285) were read and frequency of the descriptor, which may have contained multiple descriptors within one study, used to describe of someone with MS was recorded. 

There is clearly a disconnection between pwMS-preference and that used by academia, suggesting that change is needed. As lay pwMS are commonly reading and appraising research grants as part of the PPI process, academics should consider the sensitivities of how best to refer to someone with MS.  Simple consideration to these issues should be made during grant and paper-writing, as they are simple to implement. Although sufferer, which is more common in the tabloid media, was not commonly used in the medical journals, patient has its origins in Latin from the verb pati, to suffer, and through the participle form patientem, for one who is suffering. Patient is currently defined as a person who is under medical care or treatment and thus still carries a perhaps an out-dated paternalistic aura. This may need change as modern medicine evolves and decision-making is becoming a shared experience between the patient and caregiver. The medical profession has a history of being adaptive to change in relation to the description of people in their care; for example, the historical, medical use of: moron (Intelligence Quotient (IQ) <25), imbecile (IQ25-50) and idiot (IQ 50-70) as a measure of mild, moderate and profound mental retardation has ceased, as their use is considered politically incorrect and offensive by society.  

Concern has been expressed that any form of label can be used as a means for division and prejudice. With the need to have descriptors, the term pwMS was the preferred method for current description. This should be used in preference to ‘patient’ and use of both MS sufferer and MS client should be avoided. Whilst this aspect has been examined here in relation to MS, it is probably unlikely that the academic use of ‘patient’ and preference for ‘person with’ to describe any other condition is not the current norm. Therefore, a simple change in writing style could and should be adopted, if we are to show that we respect the wishes of the people that we serve and wish to help.

FUNDING: This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

ACKNOWLEDGEMENTS: The authors thank the assistance of the Multiple Sclerosis Society, notably Ms. Mital Patel. The MS Register gratefully acknowledges the support of the Multiple Sclerosis Society. NARCOMS acknowledges support from the Consortium of Multiple Sclerosis Centers, the National Multiple Sclerosis Society and unrestricted grants from pharmaceutical companies.



Baker D, Pepper G, Yauner F, Giovannoni G. MSer - A new, neutral descriptor for someone with multiple sclerosis. Mult Scler Relat Disord. 2014a; 3:31-33..

Brigo F, Lochner P, Tezzon F, Nardone R. Web search behavior for multiple sclerosis: An infodemiological study. Mult Scler Relat Disord. 2014; 3:440-443.

Compston A, Coles A. Multiple sclerosis. Lancet. 2008; 372:1502-1517.

Ford DV, Jones KH, Middleton RM, Lockhart-Jones H, Maramba ID, Noble GJ, Osborne LA, Lyons RA. The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS. BMC Med Inform Decis Mak. 2012; 12:73.

Jones KH, Jones PA, Middleton RM, Ford DV, Tuite-Dalton K, Lockhart-Jones H, Peng J, Lyons RA, John A, Noble JG. Physical disability, anxiety and depression in people with MS: an internet-based survey via the UKMS Register. PLoS One. 2014; 9:e104604.

Kister I, Bacon TE, Chamot E, Salter AR, Cutter GR, Kalina JT, Herbert J.  Natural history of multiple sclerosis symptoms. Int J MS Care. 2013; 15: 146-158.

Koberlt G, Kasteng F. Access to innovative treatments in multiple sclerosis in Europe. 2009, pg3:1-3:20 European Federations of Pharmaceutical Industry Associations.

Wednesday, 19 October 2016

#ResearchSpeak & #PoliticalSpeak: I am losing my marbles can you do something about it?

The issue of MS being a preventable dementia needs to be centre stage! #ResearchSpeak #PoliticalSpeak #MSResearch #MSBlog

About 3 years ago I launched a campaign to rebrand MS a 'Preventable Dementia'; I took a lot of stick for this campaign because it was considered stigmatising. However, the truth of the matter is that cognitive impairment, and progressive cognitive impairment, is what happens in MS. The study below by Ruano and colleagues, in over a 1,000 Italian MSers, confirms what we already know: 

"The overall prevalence of cognitive impairment was 46.3%; 34.5% in CIS, 44.5% in RR, 79.4% in SP, and 91.3% in PP MS."

The severity of cognitive impairment was greatest in MSers with progressive disease and was related to age and level of disability. What can be done about it? The message is simple; you have to try and prevent yourself from becoming disabled, in other words early effective treatments are needed as well as a brain healthy lifestyle (please see our Brain Health challenge). There is now convincing data that cognitive impairment is strongly associated with progressive brain atrophy and disability. If your MS is getting worse you need to ask the question can anything be done about it? The answer is yes. 

Some good news in a sub-study of MS-STAT phase 2 trial showed that high-dose simvastatin signficantly slowed down progressive cognitive impairment in SPMSers. How simvastatin is doing this I can't tell, but it makes a compelling case for doing a definitive phase 3 trial of simvastatin  in progressive MS. Please watch this space we have a grant application currently being reviewed by the NIHR (research arm of the NHS) to do this; the PI on the trial is Jeremy Chataway for UCL. 

Should all progressive MSers be taking simvastatin now? No. The dose used in this trial is very high and will almost certainly cause adverse effects. The findings in this MS-STAT trial could be a type 1 error, or a false positive result. We therefore have to confirm it in a larger study and show that the benefits of high-dose simvastatin outweigh the risks of the treatment (adverse events) and for the NHS show that the treatment is cost-effective. I suspect the last point is not really an issue with simvastatin as  it is off-patent and there are very cheap generics available; I am talking a few pence per day. 

BNF price: Tablets, simvastatin 10 mg, net price 28-tab pack = 84p, 20 mg, 28-tab pack = 94p; 40 mg, 28-tab pack = £1.12; 80 mg, 28-tab pack = £2.02. 

The current price of simvastatin (7.2 p/day) raises and important point about pharmaceutical innovation; the price of pharmaceuticals eventually come down so much that they become quite insignificant in the scheme of things. I can remember when I had just finished medical school (1987), and simvastatin had just been launched, there was a major debate going on about would society afford the costs of statins and that MSD was being mercenary charging so much for the drug. Now look at the price. We have to assume that the same rule will apply to current high-cost drugs, including the biologicals. In time and with further innovation in making biosimilars cheaply, future generations will reap the benefits. What we have sort out, however, is there a better model that the current one for repurposing off-patent drugs. We need away to monetise off-patent drugs so that Pharma take-up the challenge of doing the necessary trials and regulatory work to get off-patent drugs licensed. We find ourselves in a very difficult position; academia really doesn't have the resources (money) and expertise (regulatory machinery) to license drugs. 

D Chan, S Binks, J Nicholas, A Alsanousi, N Fox… - 2016. Effect of high-dose simvastatin on cognition in secondary progressive multiple sclerosis (MS-STAT cognitive): a randomised, placebo-controlled, phase 2 trial

Background: Cognitive impairment is a major contributor to disability and reduced quality of life in secondary progressive MS (SPMS). In the 24 month MS-STAT phase 2 trial we showed that high dose simvastatin significantly reduced the rate of whole brain atrophy, as well demonstrating effects on clinician and patient observed outcome measures. We describe here results of the MS-STAT sub-study, evaluating treatment effect on cognitive and neuropsychiatric outcome measures.

Objectives: 140 patients with SPMS, with Expanded Disability Severity Scales (EDSS) scores between 4 and 6.5, were randomised to receive simvastatin (n=70) or placebo (n=70). Full cognitive and neuropsychiatric testing was undertaken at study entry, 12 and 24 months.

Methods: The following cognitive domains were tested: premorbid IQ; general intellectual functioning; verbal and nonverbal memory; semantic memory; visual perceptual function; attention, speed of information processing, and working memory (PASAT-3); frontal lobe function (frontal assessement battery, FAB). Neuropsychiatric symptoms were assessed using the Hamilton Depression Scale and the Neuropsychiatric Inventory Questionnaire. Linear mixed models were used to examine how cognitive and neuropsychiatric scores changed between baseline, 12 and 24 months and to evaluate the difference in score between the placebo and simvastatin group at 12 and 24 months.

Results: Baseline assessment revealed that nearly half of patients showed impairment on frontal lobe function (45%) and on the PASAT-3 (46%). There were also significant numbers of patients (up to 33%) with impairment on tests of verbal and nonverbal memory. Over the entire trial, the cohort as a whole declined on tests of verbal and non-verbal memory. At 24 months, there was a significant difference in FAB scores between the two treatment groups, with a 0.24 point increase in the mean FAB score observed in the simvastatin-treated group, compared with a decline of 0.92 points in the placebo group: a difference of 1.08 ( 95% CI 0.09 to 2.14). No significant treatment effect was observed on any other cognitive or neuropsychiatric measures.

Conclusion: This represents the largest SPMS published cohort to have been studied with longitudinal cognitive and neuropsychiatric assessments. Frequent cognitive impairment was observed at study entry, with decline at 24 months observed primarily in episodic memory. Although results must be interpreted carefully because of the many variables examined, we found that high dose simvastatin significantly improves frontal lobe function, adding to our previous observation of a positive treatment effect on brain atrophy rates. These results highlight the importance of including detailed cognitive outcome measures within progressive MS therapeutic trials.

Ruano et al. Age and disability drive cognitive impairment in multiple sclerosis across disease subtypes. Mult Scler. 2016 Oct 13. pii: 1352458516674367. [Epub ahead of print]

BACKGROUND: There is limited and inconsistent information on the clinical determinants of cognitive impairment (CI) in multiple sclerosis (MS).

OBJECTIVE: The aim of this study was to compare the prevalence and profile of CI across MS disease subtypes and assess its clinical determinants.

METHODS: Cognitive performance was assessed through the Brief Repeatable Battery and the Stroop test in consecutive patients with MS referred to six Italian centers. CI was defined as impairment in ⩾ 2 cognitive domains.

RESULTS: A total of 1040 patients were included, 167 with clinically isolated syndrome (CIS), 759 with relapsing remitting (RR), 74 with secondary progressive (SP), and 40 with primary progressive (PP) disease course. The overall prevalence of CI was 46.3%; 34.5% in CIS, 44.5% in RR, 79.4% in SP, and 91.3% in PP. The severity of impairment and the number of involved domains were significantly higher in SP and primary progressive multiple sclerosis (PPMS) than in CIS and RR. In multivariable logistic regression analysis, the presence of CI was significantly associated with higher Expanded Disability Status Scale (EDSS) and older age.

CONCLUSION: CI is present in all MS subtypes since the clinical onset and its frequency is increased in the progressive forms, but these differences seem to be more associated with patient age and physical disability than to disease subtype per se.

DrK busting myths

So in the news this week we have "Live Blood Analysis". 

What the hell is this? 

Well another fad or should we say a Scam being promoted? 

This was unmasked by the Beeb. 

DrK has been given the short straw of a bit of myth busting...again.

For those in the UK you can catch up on BBC iPlayer but for those not in the UK here it is and yes it is Donny Osmond...His Brother David has MS.

Don't you think that Dr K should be on TV...A natural

as DrK says what does Dr Stephens N.D. standfor?..."Not a Doctor" be warned of scams!

According to Wiki

Live blood analysis (LBA), live cell analysis, Hemaview or nutritional blood analysis is the use of high-resolution dark field microscopy to observe live blood cells. Live blood analysis is promoted by some  alternative medicine practitioners, who assert that it can diagnose a range of diseases. 

There is no scientific evidence that live blood analysis is reliable or effective, and it has been described as a fraudulent means of convincing patients that they are ill and should purchase dietary supplements.

Live blood analysis is not accepted in laboratory practice and its validity as a laboratory test has not been established.

There is no scientific evidence for the validity of live blood analysis, it has been described as a pseudoscientific, bogus and fraudulent medical test, and its practice has been dismissed by the medical profession as quackery.The field of live blood microscopy is unregulated, there is no training requirement for practitioners and no recognised qualification, no recognised medical validity to the results, and proponents have made false claims about both medical blood pathology testing and their own services, which some have refused to amend when instructed by the Advertising Standards Authority.

So here we go again....most r....ish being reported by the keep my mouth shut as it gets me into trouble.

However Live cell Imaging.....easy peasy...what's this..Doesn't look good....Solution give me tons of Quids......How's it done?
                          Simple just add water! It makes cells burst, 

Farms animals and MS and the Cats Pooh Poohed

Siejka et al.Association between exposure to farm animals and pets and risk of Multiple Sclerosis DOI:
Purpose:There exists inconsistent evidence regarding animals including pets as risk factors for the development of Multiple Sclerosis (MS). We investigated the association between farm animals and pets as possible environmental factors in MS development.
Methods: Population based case-control study with 136 clinically definite MS cases and 272 controls randomly chosen from the community matched on sex and age. Data was collected from both questionnaire and a lifetime calendar detailing residence, occupation and pet/animal exposure over the course of participant's lives.
Results:Exposure to farming, livestock, specific farm animals and remoteness of residence showed no significant association with MS risk. Exposure to cats prior to disease onset was associated with a greater risk of MS (Adjusted Odds Ratio 2.46 (1.17–5.18)) but without a clear dose-response (test for trend, p=0.76).
Conclusions: In contrast to other literature, farming and exposure to farm animals were not associated with MS. While we identified an association between cat exposure and MS, there was no dose-response relationship, and previous studies showed inconsistent results, leaving us to conclude that there is no strong evidence that exposure to cats is associated with MS.
Recently someone said that pictures of lab animals were disturbing, so now you can say Ah! 

I have put some fluffy picture of some farm not say they are bred to be killed and eaten:-(

Anyway the most viewed posts on the blog is 

"Now Cats are a protective factor."

In this current work indicates that farm animals are not associated with risk of MS and that the influence of cats makes you twice as likely to get MS so may be the maybe the original idea was a load of cowclap

                             Hey but who didn't know that?:-)

There is no dose-response so I guess it is cat dander or no cat dander but anyone who is allergic to cats will tell you one is enough.

But now what happens to the kitties that were bought to reduce the Risk of MS.....a trip to Battersea:-(

                     Being serious..they do a fantastic job

However was this because it was an Australia cat verses a Norwegian cat?

This is yet another example of the tosh that is out there concerning risk of MS..., unfortunately this tosh gets picked up by the media and next thing you will be reading this in the Dail Male and Daily Repress.  However, it makes it very difficult to decide if it is going to influence your life style

So beware. 

However it shows you not every thing is reproducible and repetition with time will tell us what is right or wrong