The MS Blog Update – Your Reponses

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This MS Blog has been around since 2009, started by Prof G. But he isn’t in charge of the blog, he is one of many contributors. As of May 2021, there were over 9,200 published posts. Each month, the website sees 50% new and 50% returning visitors, with over 88,000 page views a month. Most readers are from the UK, US, Canada and across Europe. 

In April, the blog went through an “Existential Crisis” following a recent complaint about one of Mouse Doctor’s posts to which he issued an apology. This wasn’t the blog’s first crisis or complaint. Prof G reflected on the role of social media, responsibility for the blog’s content and the future of the blog. He posed the following questions to you the readers: whether the blog should have a board of editors to manage the content, whether individual bloggers should be censored or banned, or whether the blog should be closed down altogether. 

And you responded, with the post receiving 90 comments. As a qualitative researcher, I analysed these comments for common themes. All comments were positive about the blog and wanted it to continue, most people liked the current format and didn’t want it to change. You didn’t want a board of editors or for bloggers to be censored. You also made suggestions for the blog moving forward. The blog has been renamed “The MS Blog”, authors will continue to use the disclaimer and be more considerate of their content before posting. For now, the blog will continue and will be open to ways to improve its content.

Methods

NVivo 12, a qualitative data analysis software, was used to code and analyse these comments to look for common themes. I uploaded all the comments into NVivo and then went through each comment to identify similar wording, phrases, concepts and themes.

This post received a total of 90 free-text comments from blog readers and contributors. Of these 90 comments, 79 were original comments, that is not replies to already posted comments. Thirteen of the 79 comments were posted anonymously. As these were posted comments, I did not contact individuals for further information or clarification regarding their comments. 

Demographics

The majority of commentors self-identified as people living with MS, or their family/carers. Five people mentioned living outside of the UK. 

Findings

NVivo software generated a word cloud containing the 50 most frequent words written in the comments (Figure 1). The larger the word size means the more frequently it was used.

Figure 1: MS Blog word cloud

All comments spoke positively about their experience with the blog and were in favour of it continuing. Across the comments I identified four concepts involving: 1) the blog’s content, 2) the blog’s role, 3) the blog’s impact and 4) people’s recommendations about the blog moving forward (Table 1).

ConceptThemeDetails
1. Blog contentImportant/valuable resourceUp-to date information, read daily, honesty, humour
 Provides answers to questionsNot enough time during appointments, helps to prepare for appointments
 Help with treatmentAccessing treatment, making informed decisions about treatment
 Access to researchMakes research understandable
 Only/best source of informationNothing comparable online
 Don’t understand all information Some information is too complex or clinical, but learning a lot/doesn’t matter
2. Blog roleBlog is an open forumShouldn’t be censored, needs to be independent, unfiltered content
 Provides challengeChallenges conventional dogma, stimulates debate, is critical, learn to ask the right questions
 Sharing knowledgeSupport from other blog readers, learn from other questions asked
3. Blog impactMS communityGive patients agency over MS, is a lifeline, feel listened to 
 Personal impactIncreased knowledge, helps with lifestyle choices, helps with treatment, sadness/sense of loss if blog closes, appreciation for blog + team, blog is a coping strategy to deal with MS
4. RecommendationsFee paying siteMake blog membership based
 Contributors self-censorThink before submitting, required time period before submitting, quality criteria for posts
 Re-brand blogNon-Barts affiliation
 No changeLike current format, don’t want board of editors
 More moderationRemove option to comment, formal guidelines
 Keep disclaimerDisclaimer is sufficient
Table 1: Concepts and themes

Once a piece of information is submitted to the digital world, it is impossible to erase its digital footprint and any consequences. Evidently, not everyone is positive or satisfied with the blog and its contents given the complaints it has received over the years. However, this was not reflected in the posted comments.

How much is someone able to feely speak their mind on social media, even with a disclaimer? Is citing independence from professional and educational affiliations sufficient? It is clear from blog readers’ responses that they had a need for the blog and a desire for it to continue, and in its current format. They were not in favour of having a board of editors, or for bloggers to be censored. People liked the honesty and challenge of the information presented in posts. Not everyone understood or agreed with all the information presented, and the blog addressed difficult realities about MS. The blog has been a valuable resource to help people manage their disease and treatment, while accessing current research. One of the biggest appeals of the blog was the information it presented and contributors’ opinions. This made the blog unique and set it apart from other online information sources. 

The blog has had a positive impact on the wider MS community and individually. People were saddened at the thought of it not continuing and no longer having access to information on the blog. They offered suggestions on how to improve the blog, including blog contributors being more thoughtful about the content of posts before submitting them. What does self-censorship look like in practice?

These comments were analysed in isolation in response to a blog post questioning whether the long-standing MS blog should change its format or no longer operate. The purpose of this analysis was not to look for positive and/or negative feedback about the blog, but to understand people’s responses to the idea of having the MS blog altered or removed. Therefore, the analysis was limited with the data collection methodology being based on single stand-alone comments without any further follow up or clarification. 

It is also important to consider any biases. For example, those who read the blog are positively engaged with the blog, therefore may post more positive comments. People with negative feelings towards the blog may not feel comfortable or able to comment negatively on a public forum. As all comments posted were positive and in favour of the blog, it is evident this was not the forum or opportunity to express dissenting voices. 

The questions raised by Prof G in his blog post did not ask how the blog could be improved, or for negative feedback but were specifically around who is responsible for the blog and how it should be managed. 

Conclusion

While acknowledging the limitations to this study, this blog post received a high number of comments compared to other daily posts. Some posts were extremely descriptive and shared personal experiences of living with MS, and how the blog has helped them to understand and live with MS. The content of the comments, in addition to the analytics of the monthly visitors to the website, indicate that there are many people who interact and engage with the blog on a regular basis. However, the number of comments only represent a small percentage of the blog’s total readership. 

Disclaimer: Please note that the opinions expressed here are those of the author and do not necessarily reflect the position of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.

Heather Mah is a PhD researcher at the Wolfson Institute of Preventive Medicine, Barts and the London School of Medicine and Dentistry at Queen Mary University London exploring the experiences of people with MS and healthcare professionals involved with Patient and Public Involvement (PPI).

About the author

Heather Mah

15 comments

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  • Thank you for this analysis Heather. It was clear from the high number of responses that people are passionate about the blog’s continued existence. Two things striking me:-

    a) It was rather like a small campaign. Reclaim Our Blog. It was a defence of free speech.

    b) While I understand you comment that people who disagree with the blog or the “offending” blog, they may not feel able to register their disagreement.

    To that I say, “Why ever not?” No-one will be knocking their door at 3am if they do. Most importantly whoever it was who complained, clearly wanted to express dissent. It’s significant to me that they saw fit to do so anonymously. Shame on them. If I have something to say I stick my head up and risk having it blown off. Anonymous whiners are cowards.

  • This Blog is such a valuable source of information both from contributors & readers. I have grown to be familiar with alot of you & look forward to reading articles & in particular those which attract alot of comments as 9/10 times they are relevant to me & I don’t feel so completely isolated, as you can often do living with MS. Have grown to be a big fan of Sid’s, and others, the last few months.
    I normally read the Blog every day, but I also search historical articles for information. I was initially drawn to the Blog several years ago as Prof G was the only person I could find who had something positive to say about alemtuzumab.
    I am so glad the Blog is continuing, it would be greatly missed if it were to stop. Personally, I love it when articles are written from the heart & without censorship, but happy to take you all anyway that’s needed.
    Am slap bang in middle of relapse & am feeling rather emotional, so apologies if I’m sounding mushy!!

  • This blog saves live. In the US, the CDC triumphantly announced on may 13 that vaccinated adults could remove their masks and go back to normal life. It took several days for them to issue a caveat that some immunocompromised people may not have full protection from the Covid vaccine an should talk to their doctors, and it was barely in the news cycle so it was easy to miss and there was zero outreach from any of my doctors or my drug manufacturer (for ocrelizumab).

    Thanks to the information in this blog about ocrelizumab and other anti-CD20s, I not only knew that the CDC guidance was inappropriate for me but also was able to show convincing data to my employer, friends and family to explain why I can NOT return to normal life like them and need to maintain precautions. Just got a spike protein antibody test and it came back negative as another compelling data point.

    Without the information shared in this community, I may not have known that I needed to maintain precautions or had compelling data to convince my employer to allow me to continue working friend home. Sadly, there are a number of stories of organ transplant recipients getting Covid post-vaccination because they didn’t know that they had low vaccine response. I firmly believe that you prevented me from naively exposing myself to Covid like them. While I’m young and could probably survive Covid, my MS tends to flare after illness, so I consider Covid a major threat to my MS and long-term well-being.

    • LC , I appreciated your post. The lack of guidance by cdc and doctors and disbelief by others re my personal risk as a vaccinated immune compromised person has felt surreal and literally isolating. Sharing your personal experience, which is much like mine, reminds me that I’m not alone or crazy. Thank you.

  • Thank you for the analysis and congratulations to everyone involved in threading the needle to continue the blog largely intact. My use of other MS centered blogs and websites has observed how extremely difficult it is to provide content and comment which benefit a large population of readers and participants. For example, Patients Like Me usage seems to have plummeted in recent years and MS World has virtually moderated itself out of existence by making certain even mildly controversial posts offend no one, especially board biases. Both of these sites formly had thousands of active users; today only a handful. Although PLM has considerable redeeming vitures the other site mentioned is all but dead, it appears, compared to what it used to be. When debate, opinion, and all hint of controversy are removed precious few are interested in what remains. There is a lesson to be learned.
    Thousands of MSers are extremely thankful this blog has retained its flavor and vigor. Again, congratulations on threading the needle. It ain’t easy, as someone said… all noble things are difficult.

By Heather Mah

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