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News and Opinions about MS, Health & Disability

MS bodies look for NICE support for PPMS treatment

Leading MS organisations are seeking support to gain approval for ocrelizumab (Ocrevus) to treat all primary progressive MS (PPMS). It is already approved for use against early PPMS.

ocrelizumabBoth of the UK’s MS Society and MS Trust are campaigning to get the medication approved for wider use by the country’s National Health Service (NHS). And they are seeking the support of patients, carers, and health professionals in their efforts to influence the National Institute for Health and Care Excellence (NICE).

NICE is currently assessing ocrelizumab for PPMS to decide whether it should be prescribed by the NHS in England and Wales.

The MS Society said: “We’ll be telling NICE why people with both primary progressive and relapsing MS should be able to access ocrelizumab through the NHS.

“We want to hear from people who’d like to take ocrelizumab, to support our submission to NICE.

Tell what it’s like to live with PPMS

“Do you have relapsing MS and think you’d benefit from taking it? Or, if you have primary progressive MS, can you help us tell NICE what it’s like to live with, and why the first treatment option matters to you?”

To give the society your views, you are asked to send an email here.

The MS Trust says it will be explaining to NICE why it thinks ocrelizumab should be made available on the NHS.

The trust also appealed for support. It said: “To help us make a strong case, we want to hear your experiences of living with PPMS, your views on current NHS care for PPMS and your thoughts on ocrelizumab.

“We’d like to hear from you if:

        you have primary progressive MS

        you have a different type of MS, but would like to add your views

       you are a partner / friend / relative / carer of someone with PPMS

      you are a health professional providing care for people with PPMS

“Tell us what you think by completing this short questionnaire by 14 February.”

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Disability benefit review does not need sensationalist headlines

A newspaper editor once told his reporters: “Don’t worry about the facts, give me the sensation.” Sounds far-fetched, right? But, it’s true. I know as I was there, I was one of those reporters.

That editor used headlines like “Women scream as ….” to sell newspapers. He was not so much a journalist as a sensationalist. He was more interested in the bottom line of the financial accounts than the truth.

The truth, however, is crucial. It is what journalists live by, and what everyone (readers, viewers, and listeners) deserves to receive.

I was reminded of that sensationalist editor this week when various parts of the media pounced on a government decision and exploited people’s fears. In particular, it fed the fears of recipients of a key disability benefit.

It all surrounds the decision of UK works and pensions secretary Esther McVey not to challenge a court decision. Judges had decided that her ministry had acted wrongly in how it dealt with personal independence payment (PIP). I reported this decision on January 20.

 Following the decision not to challenge the court ruling, the Department for Work and Pensions (DWP) now has a duty to review the cases of certain claimants. This is to ensure that they have been given a high enough award, and to correct any it finds are wrong.

Instead, the DWP announced plans to review ALL the PIP claims. Now, I am not a fan of this government or the DWP, but I think that this is being thorough. Hopefully, it will all turn out well.

Some elements of the media have fed on the fears of some claimants that the review will mean they may face re-assessments, with all the stress they entail.

Sensationalist ‘terror’ headline

Just one headline that went straight for sensation was published on Thursday. It read: “Disabled people’s response to PIP review: STARK TERROR”. The terror was real, although caused by an uncorrected misapprehension.

You see, the DWP had already said that no disabled people will have their benefits reduced because of its decision to review 1.6 million PIP claims.

The Disability News Service reported:

sensationalist

Sarah Newton MP, minister for people with disabilities.

Sarah Newton, the minister for disabled people, announced this wee that, following McVey’s decision not to appeal the court ruling, DWP would review every one of the 1.6 million PIP claims that have been made since the benefit was introduced in 2013 to see how many had been wrongly assessed and were now entitled to backdated PIP payments.

The review will include all those previously found ineligible for the benefit after being assessed by DWP and its contractors, Atos and Capita.

The cost of implementing the court judgement is estimated to be up to £3.7 billion over the next five years.

Newton announced the review on Monday in a written answer to a question from Labour’s shadow work and pensions secretary, Debbie Abrahams.

Newton said the following day – in response to an urgent question from shadow disability minister Marsha de Cordova – that no-one would see their benefits reduced as a result of the review.

So, free of any sensationalist: YES there is a review, but NO reassessments. YES, some are likely to receive increased benefit payments, but there will be NO reductions in benefit.

If that is all true, and it seems to be, there is no cause for alarm or terror.  But, can we rely on the DWP and its ministers to speak the truth? That is another matter entirely. Only time will tell.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Fatigue makes it difficult to push on

I love writing. No surprise there, it has after all been a major part of my life. But, today, it’s not so easy because I have been hit by a bout of fatigue.

Fatigue is just one possible aspect of multiple sclerosis – but there are plenty of other causes too.

And for anyone fortunate enough not to be affected by fatigue, please don’t tell us to get a good night’s sleep. Be assured, that is not enough.

So, what is fatigue?

The medical information website healthline.com says:

Fatigue is a term used to describe an overall feeling of tiredness or lack of energy. It isn’t the same as simply feeling drowsy or sleepy. When you’re fatigued, you have no motivation and no energy. Being sleepy may be a symptom of fatigue, but it’s not the same thing.

Fatigue is a common symptom of many medical conditions, which range in severity from mild to serious. It’s also a natural result of some lifestyle choices, such as lack of exercise or poor diet.

If your fatigue doesn’t resolve with proper rest and nutrition, or you suspect it’s caused by an underlying physical or mental health condition, see your doctor. They can help diagnose the cause of your fatigue and work with you to treat it.

Why do we get fatigue?

Causes of fatigue can be described, in general terms, as your lifestyle, and your physical or mental health.

Healthline lists lifestyle factors as physical exertion, lack of physical activity, lack of sleep, being overweight or obese, periods of emotional stress, boredom, grief, taking certain medications such as antidepressants or sedatives, using alcohol on a regular basis, using street drugs such as cocaine, consuming too much caffeine, and not eating a nutritious diet.

We know that those of us with MS can get fatigue but there are other physical conditions that can also cause it. Healthline says these include, anemia, arthritis, bromyalgia, chronic fatigue syndrome, infections such as cold and flu, Addison’s disease – a disorder that can affect your hormone levels, hypothyroidism or underactive thyroid, sleep disorders such as insomnia, autoimmune disorders including MS, congestive heart failure, cancer, diabetes, kidney disease, liver disease, chronic obstructive pulmonary disease, and emphysema.

As for mental health conditions, fatigue is a symptom of anxiety, depression, and seasonal affective disorder.

In my case, I’ll blame the MS but today the level of fatigue has been made worse by trying to do too much, too quickly.  Right now, I feel totally worn out and am having trouble keeping my eyes open.

Goodnight.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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New Year resolutions: Do we want or need them?

New Year resolutions may have their place in some people’s lives but not in mine. That’s not to say that I never set targets, and set out to achieve them, but I cannot see anything special about January 1.

Yes, it marks the start of a new calendar year – but, so what?

resolutions If you want to start, or stop, doing something in your life, then you should start doing so immediately. For example, give up smoking on March 23 or start a new diet on August 4. There is nothing magical about the beginning of January.

And, if truth be known, most New Year resolutions don’t last very long. Determination of most people, even those with the very best intentions, tends to wane fast and their resolutions quickly fall by the wayside. Mostly, this happens in months, if not weeks, or even days.

I am completely sure that I’d be one of those who give up and ditch their resolutions sooner than later. And this is fine for anybody who wants to do something, but not for someone who needs to do it.

‘Want’ vs ‘need’

There is a great deal of difference between ‘want’ and ‘need’. As an example, you might ‘want’ to eat a large meal, but it isn’t a ‘need’. However, you do ‘need’ to eat to live. To put it simply, a ‘want’ is something you would like to have, but is not absolutely necessary. While a good thing to have, it is not essential. A ‘need’ is essential.

As someone with a chronic disease, in my case multiple sclerosis, the need to look after myself is extremely important. It could even be described as critical.

It includes keeping a careful watch on what I eat along with the amount and level of exercise I take. Also, through my doctor, I have to keep an eye on my vitamin levels, particularly B and D. I was found to be vitamin D deficient in 2016, and a couple of months ago my vitamin B level was discovered to be too low. I have now been prescribed supplements of both.

To live as healthy a life as possible is an ongoing need. It is not related to the New Year and will not be put aside like a resolution.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Frankincense – a possible future treatment for MS, new research

One of the original Christmas presents may turn out to be a 21st century gift to people with multiple sclerosis.

Most people, whatever their faith if any, will be familiar with the story of the Three Kings, or wise men. According to the story, they arrived in Bethlehem and gave the baby Jesus their offerings of gold, frankincense and myrrh.

If you didn’t know, and I don’t see why you should, frankincense is an aromatic resin used in incense and perfumes. It is obtained from trees of the genus Boswellia.

frankincense

The tree from which frankincense is obtained.

Now, a group of researchers in Germany say that an extract can be used to treat relapsing MS.

The study, “A standardised frankincense extract reduces disease activity in relapsing-remitting multiple sclerosis (the SABA phase IIa trial)” was published in the Journal of Neurology, Neurosurgy, and Psychiatry, on December 16, 2017.

It found that an oral administration of a standardised frankincense extract (SFE) is safe and reduces disease activity in patients with relapsing multiple sclerosis (RMS).

The researchers concluded that the oral SFE was safe, tolerated well and exhibited beneficial effects on RMS disease activity. They added that it warrants further investigation in a controlled phase IIb or III clinical trial.

Frankincense study explained

The study reports that, after a 4-month baseline observation phase, patients were treated for 8 months with an option to extend treatment for up to 36 months.

It says: “The primary outcome measures were the number and volume of contrast-enhancing lesions (CEL) measured in MRI during the 4-month treatment period compared with the 4-month baseline period.

“Eighty patients were screened at two centres, 38 patients were included in the trial, 28 completed the 8-month treatment period and 18 of these participated in the extension period.

“The SFE significantly reduced the median number of monthly CELs from 1.00 to 0.50 at months 5-8. We observed significantly less brain atrophy as assessed by parenchymal brain volume change.

“Adverse events were generally mild (57.7%) or moderate (38.6%) and comprised mainly gastrointestinal symptoms and minor infections.  

“Mechanistic studies showed a significant increase in regulatory CD4+ T cell markers and a significant decrease in interleukin-17A-producing CD8+ T cells, indicating a distinct mechanism of action of the study drug.”

The science seems to be based on the fact that frankincense contains boswellic acids that are anti-inflammatory.

It will be interesting to see if further studies will be undertaken and, if so, what the eventual outcome may be.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Gene therapy prevents, even reverses, MS in animal model – new research

Multiple sclerosis can be inhibited, or even reversed, according to University of Florida researchers. They used a novel gene therapy technique that, they claim, stops the disease’s immune response in mouse models.

Obviously, if that can be reproduced in humans, it has the potential to be wonderful news.

The researchers paper is “Gene Therapy-Induced Antigen-Specific Tregs Inhibit Neuro-inflammation and Reverse Disease in a Mouse Model of Multiple Sclerosis”. Molecular Therapy published it last week.

gene therapyBy combining a brain-protein gene and an existing medication, researchers were able to prevent the mouse version of multiple sclerosis. Likewise, the treatments produced near-complete remission in the animal models.

Researchers said that their findings have significant potential for treating MS and other autoimmune disorders.

The paper says researchers used an adeno-associated virus, to deliver a brain protein gene into the livers of mouse models. The virus sparked production of so-called Tregs (regulatory T cells), which suppress the immune system attack that defines multiple sclerosis. The gene targeted the liver because it has the ability to induce immune tolerance.

Brad E Hoffman PhD is an assistant professor in pediatrics and neuroscience at the University of Florida College of Medicine. He said: “Using a clinically tested gene therapy platform, we are able to induce very specific regulatory cells that target the self-reactive cells that are responsible for causing multiple sclerosis.”

Encouraged by longevity of gene therapy

Hoffman says he Is encouraged by the longevity of the gene therapy. Mouse models treated with gene therapy showed no signs of disease after seen months. He compared It with a group of untreated mouse models that had neurological problems after 14 days.

The protein was combined with rapamycin — a drug used to coat heart stents and prevent organ transplant rejection — and researchers found its effectiveness was further improved.

We chose this drug because it allows helpful regulatory T-cells to proliferate while blocking undesirable effector T-cells, Hoffman said.

Further research is needed before tests of the therapy in humans are carried out in a clinical trial, Hoffman said. Researchers also need to target the full suite of proteins that are implicated in multiple sclerosis, he added.

Still, Hoffman said he is extremely optimistic that the gene therapy can be effective in humans.

“If we can provide long-term remission for people and a long-term quality of life, that is a very promising outcome,” he said.

The research was funded by grants from the National Multiple Sclerosis Society, the National Institutes of Health and the Children’s Miracle Network.

My view is that while it is still early days, the results so far seem very encouraging. I look forward to learning about further developments as time progresses.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Clinical Writer with Healthline, the fastest growing health information site. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Home from Moscow, strangely contented

Yesterday was a long and tiring day, returning home to the sunny and south of Spain from the colder temperatures found in Moscow.

With the help of two members of the support team, I left the hospital at 7am, which was 6am in Spain, eventually getting home at 10.30pm. Believe me, 16½ hours of travelling and layovers is a tiring experience which is probably why it was gone midday before today woke me from my slumbers.

Being in Russia, in the AA Maximov HSCT clinic, was an experience I am glad to have had, but nothing comes up to the delight brought about by being home again. Home with Lisa, the love of my life.

In the clinic, bonds are quickly established between patients at various stages of the process and, even though only there for assessment, I immediately found myself welcomed as one of the community.  And I now have new Facebook friends so we need never lose touch.

MRI brain scan. This is a stock picture,not one of mine,

MRI brain scan. This is a stock picture,not one of mine.

Several people have sent me comments since my assessment result was revealed – that I would not be accepted to have HSCT. Some have said how sorry they are that I cannot have the treatment; others have expressed their pleasure that the MRI scans showed that my lesions are inactive and that my future is looking good according to Moscow’s Dr Fedorenko.

So, how do I feel? Strangely, contented.

The fact that my lesions, which exist in both brain and spine, are inactive is great news in itself. And to have Dr F tell me that my prognosis for MS is no, or in the worst case very slow, progress is something that I had never dreamed could happen.

So, in short, I am in a good position.

On top of that, I had so many checks on various internal organs that I know now exactly what is wrong in much more detail than before.  The scans, x-rays and other tests – also show that there is nothing unwanted, nothing that should not be there.

new strap

50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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Unfair PIP assessments are disgraceful and scandalous

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Personal Independence Payment (PIP), a UK disability benefit, was refused totally last week to a guy whom I knew at school in the 1960s. He is a private man and doesn’t want a fuss. He is just getting on with seeking a reconsideration before, if needed, launching a full appeal.

It’s just not right, he was receiving Disabled Living Allowance (DLA) and has got no better. In fact, he had a home assessment. No-one contacted his doctor and, he says, the assessor seemed more interested in getting away than doing her job properly. This is a scandalous way to treat people who have disabilities.

Then, yesterday, we heard of another man with a similar case. The Northern Echo told the story of a man with learning difficulties suddenly being told he is fit to work.

‘The government doesn’t care about people like me’, says Edward West, of Darlington, who has been considered unable to work for the entirety of his adult life..at the age of 44, he must now look for full time work within an hour’s commute after the Department of Work and Pensions unexpectedly declared him fit for employment.

The Northern Echo takes up the story:

Mr West lives in sheltered accommodation, has significant learning difficulties and needs the support of a carer several times a week.

The vulnerable man struggles to cope in unfamiliar situations, has mental health issues and says anxiety and distress would make a daily commute, long hours and interactions with colleagues impossible.

Edward West (Picture: The Northern Echo).

Edward West (Picture: The Northern Echo).

However, after attending his first Work Capability Assessment without professional support, he failed to score enough points to be eligible for ESA (Employment and Support Allowance).

Following a face to face assessment, a report was issued saying Mr West would need somebody with him to travel to unfamiliar places but was otherwise fit to work.

The report cited his ability to get to his GP, time spent socialising with his brother and a perceived lack of anxiety at the assessment.

It is believed the DWP did not contact Mr West’s GP or consider medical records before making a decision, expecting him to have contacted them for evidence to support his claim.

Mr West now claims Job Seekers’ Allowance (JSA) and must look for full-time work within a 60 minute commute or risk losing benefits.

An emotional Mr West said new “box-ticking”, point-scoring disability assessments mean people like him are falling through the gaps.

He said: “They didn’t speak to my GP or social worker and didn’t listen to me. The system should be scrapped, they didn’t look at my records or my past, just judged me on what I said that day. I cried when I found out and I’m really frightened, I don’t know what to do.”

Assessments like these are a disgrace ad it’s no wonder that 50 – 60% of people in this position go on to win their appeals.

 

 

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Stem cell clinical trial is real, not ‘false hope’

stem cell therapy_edited

This blog’s story about the outcome of the long-term clinical trial of stem cell therapy was deleted from one Facebook group on the grounds that it did not wish to allow anything that would give its members ‘false hope’.

Actually, nor do I.

That is why, writing both in Multiple Sclerosis News Today and here, I very carefully kept to the findings as published in The Lancet, plus comments made afterwards.

The fact is that this was the first long-term clinical trial of the same procedure as used today in major HSCT clinics worldwide. It was a small trial but that was acknowledged by the researchers who said a larger trial was necessary.

I purposely did not say, as many journalists did, that scientists are close to finding a cure. Theaustralian.com.au said ‘Multiple Sclerosis cure very near’ while thetimes.co.uk said ‘Scientists close to a cure for multiple sclerosis’. That was not a statement made in the study’s report, nor was it claimed afterwards. I can see little justification for headlines mentioning a ‘cure’. Just one doctor, a stem cell biologist not involved in the trial described it as ‘close to being curative’.

HSCT or, more correctly, aHSCT has never been claimed to be a cure. Despite some notable anecdotal tales of the disease being reversed in some people, the therapy has only ever been claimed to stop MS progressing; to stop it getting worse.

And that is what the clinical trial proved. It said relapses were halted and MRI scans showed no new brain lesions.

The word ‘cure’ was not mentioned in the report of the trial, nor in my story about it.  So, no false hope there!

It is a shame that members of one FB group were denied the opportunity of seeing my fair and objective article on this issue.

Now, if I had wanted to court controversy or talk about ‘false hope’, I could have written about CCVI and its supposed link with MS, which is unsupported scientifically. The whole issue of CCVI still divides opinion and is, at best, unproved by any clinical trial that meets accepted standards. That may change in the future. Who knows?

 

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Wheelchairs enable users and restore independence

Out and about independently in his wheechair

Out and about independently in his wheelchair.

Surfing the internet, for want of something better to do, I came across the old but now outdated expression ‘wheelchair bound’.

It was in an article about MS published by Medical News Today in which Honor Whiteman wrote: “According to the National Multiple Sclerosis Society, around two thirds of people with MS retain their ability to walk, though many individuals may require the assistance of a cane or crutches to get around. In severe cases, some patients may become wheelchair bound.”

And it cannot be classified as an ‘old’ story, having only been published on January 27 this year.

For everyone who uses a wheelchair, whether always or only part of the time, I feel compelled to speak out. We are not ‘wheelchair bound’ nor are we ‘confined to’ them. Wheelchairs actually increase our ability to get around. They enable us, even empower us, to go to a variety of places and do different things. What’s more, self-propedd manual wheelchairs or electric powered ones that we can control ourselves give us both independence and freedom that would otherwise be denied to us.

So, please, don’t describe us as ‘wheelchair bound’, instead consider us as ‘wheelchair users’; maybe even ‘wheelchair enabled’, or is that a step too far?

Speaking about what to say when talking or writing about people with disabilities, let’s start right there. You need to know that, most of us don’t want to be termed as disabled people. We are people first; our disabilities are secondary.

Similarly, I have MS but I don’t suffer from it, nor a victim of it. Instead, I live with it. Whatever disability anyone may have, they are not sufferers or victims.

Some may regard this as political correctness but, really, it isn’t. It is just good manners to recognise that we are more important than our disabilities.

Everyone has different likes and dislike; as well as differing opinions. And, strange as it may seem, in this respect, people both with and without disabilities are the same.

For example, the UK has long ado dispensed with the word ‘handicapped’ and now uses ‘disabled’. In USA and Canada, the term ‘handicapped’ is accepted and widely used although in the States the law relating to rights etc is called the Americans with Disabilities Act. Hotels tend to describe their accessible rooms as ADA rooms.

Purely, personally, while preferring the use of ‘disability’, I think ‘handicap’ should be equally acceptable. I doubt that the time will ever arrive when the use of ‘differently-abled’ will ever come easily to me. It smacks so much of the political correctness that is so detestable to me.

 

 

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