UA-79233833-1

50shadesofsun

News and Opinions about MS, Health & Disability

Medicinal cannabis legalisation could help treat many diseases

Disease and patient-orientated organisation the MS Society is leading support for a move to legalise medicinal cannabis in the UK.

The House of Commons is soon to consider the Legalisation of Cannabis (Medicinal Purposes) Bill 2017-19. It is a Private Member’s Bill sponsored by Paul Flynn, Labour MP for Newport West.

cannabis

Paul Flynn MP.

The Bill is due to have its second reading debate in two weeks, on Friday 23 February 23. It received its first reading on October 10 last year

In summary. the Bill would allow the production, supply, possession and use of cannabis and cannabis resin for medicinal purposes; and for connected purposes.

I believe such a move should be welcomed.This is because it would stand to benefit many more people than those with MS. It could potentially help relieve the symptoms of chronic pain, spasticity, and a host of other medical conditions and diseases.

Writing in the UK’s Pharmaceutical Journal, Flynn said: “During my 30 years in parliament I have campaigned against the harm caused by the antidepressant paroxetine and the nonsteroidal anti-inflammatory drug rofecoxib; and I now chair a campaign opposed to the growing menace of opioid misuse. But cannabis is a drug that evidence suggests could provide unique relief for many who suffer from the cruel disease MS. The law should not criminalise patients seeking relief from pain and spasm.”

Cannabis can help where other treatments fail

The MS Society is one of the organisations keen to support the Bill. The society’s campaign team says: “For some people with MS, there’s no effective legal treatment for pain and muscle spasms. But many find that cannabis for medicinal use can help when other treatments haven’t. 

cannabis“Right now, cannabis for medicinal use is illegal. We want the UK Government to make it available to people who could benefit.  

“When we asked last year, 72% of people with MS agreed that cannabis should be legalised for medicinal purposes.

“A Bill tabled by Newport West MP Paul Flynn on the legalisation of cannabis for medicinal use is scheduled to be discussed in the House of Commons this month on this issue. We need the UK Government to take action.”

The society is also urging its members and supporters to get behind the Bill and take action. It says:

“Please Tweet your MP and ask them to write to the Minister. You’ll be helping to show the UK Government how much support there is for this issue. If you don’t have Twitter, please email your MP instead.

“With your help, we can get closer towards a change in the law.”

Medical Marijuana Inc says medicinal cannabis has “potential as a viable treatment option for helping to manage chronic pain, nausea and spasms, and for providing healing effects for those with serious conditions like multiple sclerosis, arthritis, inflammatory bowel disease, HIV/AIDS, diabetes, cancer and spinal cord injuries.”

Its website lists 45 conditions for which, it says, “medical marijuana is now a treatment.”

The sooner that the UK government legalises medicinal cannabis the better.

* * * * *

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

* * * * *

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.

* * * * *

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.

No Comments »

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.”

* * * * *

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

* * * * *

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.

* * * * *

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.

1 Comment »

Cuts proposed to MS treatment options

It cannot be right, it really can’t! People with multiple sclerosis are facing being denied access to five previously approved disease modifying therapies (DMTs). This shocking development would affect people who are newly diagnosed or those wishing to change to a different drug.

The proposal to cut the number of treatment options comes in the form of a draft recommendation from the UK’s National Institute for Health and Care Excellence (NICE). Its preliminary proposal would affect people with MS in England and Wales who receives treatment via the country’s National Health Service (NHS).

NICE’s role is to provide national guidance and advice to improve health and social care.

A consultation period on the proposed recommendation ends this Wednesday, January 24, so very little time remains for patients, doctors, caregivers and others can make their views known. To add your comment, click on this link.

NICE is to meet again on March 6 to review comments received, and discussions it has had with the drugs’ manufacturers, before it makes its final recommendation.

treatment optionsThe good news is that, under the preliminary proposal, anyone with MS who is already on one of these treatments would be able to continue to take them.

NICE’s draft recommendation, if confirmed, would mean the cheapest drug Extavia (interferon beta-1b) would continue to be available on the NHS for new patients. But five others would no longer be treatment options because of costs.

The five medications that NICE is proposing to make unavailable to people who are newly diagnosed, or want to change their treatments, are:

  • Avonex (interferon beta-1a)
  • Betaferon (interferon beta-1b)
  • Copaxone (glatiramer acetate)
  • Plegridy (peginterferon beta-1a)
  • Rebif (interferon beta-1a)

NICE says it has made the draft recommendation because it believes that while all the treatment options have a similar clinical effect, only Extavia is cost-effective.

Treatment options: a step backwards

Both the MS Society and MS Trust are ranged against the proposal.

MS Society director of external affairs Genevieve Edwards says the society doesn’t want to see patient choice limited in this way.

She said: “While people with MS already receiving these treatments can be assured they won’t have to come off them, we’re worried about what this proposal means for the future of patient choice. We have made so much progress on treatment options for people with MS, and it would be a significant step backwards if people with MS were now left with less choice and potentially no effective option.

“We want the companies who make these drugs to keep negotiating and come to a deal with NICE and NHS England so patients don’t lose out. Everyone with MS should be able to get fair and equal access to the right treatments at the right time.”

A statement from the MS Trust says it is very disappointed in the initial decision.

It says: We do not believe that NICE’s recommendations are in the best interests of people with MS or the NHS.  We strongly believe that all current treatments should remain available as treatment options for all eligible patients.

“NICE has acknowledged that all six drugs are equally effective at reducing the number of relapses and slowing down disability progression. The decision to approve Extavia and not the other five drugs all comes down to cost – Extavia is the cheapest option.

“These recommendations would take away choice from people with MS.  In our view, the recommendations do not take account of:

  • the differences in how treatments are administered
  • the diverse lifestyles of people with MS, and how different treatments suit different people
  • the differing tolerances of individuals to the side effects of the drugs”

* * * *

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

* * * * *

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.

* * * * *

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.

 

No Comments »

Healthy eating can improve MS symptoms, but societies won’t endorse any one diet

Multiple sclerosis organisations around the world back the idea that eating a healthy diet can help people with the disease. But they are refusing, correctly in my view, to get behind any one diet.

dietA new study, published in Neurology, says that eating a healthy diet may be linked with reduced disability and fewer MS symptoms. Such a diet would include fruits, vegetables, and whole grains.

I have never attributed any importance to people saying that diet cured them of MS. In fact, it’s nothing short of hogwash. But that’s not to say that diet cannot help, just that it is not a cure by itself.

There are a number of dietary plans for which claims are sometimes made, and about which strong views are held. These include the Swank and Overcoming MS diets. Supporters of Swank, for example, believe it can reduce the frequency of flare-ups and lessen the severity of symptoms.

However, the US’s National MS Society and the UK’s MS Society say there is not enough evidence to recommend any one diet.

The authors of the new study, led by Kathryn C. Fitzgerald, acknowledges that there is a lack of evidence on the potential influence that diet may have on MS symptoms.

Fitzgerald works in the Department of Neurology, Johns Hopkins School of Medicine in Baltimore, Maryland, USA. She says: “People with MS often ask if there is anything they can do to delay or avoid disability. Many people want to know if their diet can play a role, but there have been few studies investigating this.”

Severe disability 20% less likely

To examine the role that diet may play in MS, Fitzgerald’s team looked at questionnaires completed by 6,989 people with MS as part of the North American Research Committee registry.

The team found that people in the group with the most healthy diet were 20% less likely to have more severe physical disability than people in the group with the least healthy diet.

Fitzgerald adds: “While this study does not determine whether a healthy lifestyle reduces MS symptoms or whether having severe symptoms makes it harder for people to engage in a healthy lifestyle, it provides evidence for the link between the two.”

The authors acknowledged that the study has two limitations:

·         First, participants were mostly older white people who had been diagnosed with MS for an average of 20 years. So, although people with all types of MS were included, the findings might not apply to everyone with the disease.

·         Second, the study’s design does not provide an insight into whether healthy diets might influence MS symptoms in the future.

What can a diet do for someone with MS? In my opinion, about the same as it can do for someone without the disease; a balanced diet helps to achieve and maintain a healthy level of fitness. But it is not a cure and never can be; don’t let anyone tell you otherwise.

* * * * *

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

* * * * *

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.

* * * * *

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.

3 Comments »

MS Society says a research triple whammy will stop MS

MS Society research communication manager David Schley has taken to Twitter to talk about what the society is doing to stop multiple sclerosis in its tracks.

In his Tweet, Dr Schley wrote:

We now know enough about what goes wrong in MS to know what needs to be done to fix it. 

Scientists are working on three ways to tackle MS: stopping the immune damage, promoting myelin repair and protecting nerves from damage.

research

Dr David Schley (pic: MS Society).

 

We’re not there yet, but we believe that if we achieve these goals then we can stop MS.

In MS, immune cells attack the protective myelin coating around our nerve cells. Myelin plays a vital role in how nerves work and also protects them from damage. 

When myelin becomes damaged, messages find it harder to get through – or can’t get through at all. That’s what causes the symptoms of MS.

Step 1: stop the damage in its tracks

To stop MS early we need to prevent our immune system damaging myelin.

There has been incredible progress in this area of research, and we now have 12 available disease modifying therapies (DMTs) for relapsing MS that help do this.

Researchers are also testing the benefits of stem cell transplantation (HSCT), which aims to stop the immune system attacking myelin. 

We’re starting to see progress in immune system research for progressive MS as well. Last year a treatment called ocrelizumab was shown to slow progression in primary progressive MS. And the latest results for the drug siponimod look promising for secondary progressive MS too. But these drugs can’t help if permanent damage has already been done.

Right now, we’re funding nine projects that look at the role immune cells play in MS.

Step 2: repair myelin

Our bodies have an amazing capacity to repair myelin and get nerves working properly again. But this repair becomes less effective over time and doesn’t work as well as it should in MS.

Researchers are finding new ways to put myelin back on nerves. We’re funding 12 myelin repair projects, including our world-class research centres in Cambridge and Edinburgh.

Every discovery brings new opportunities for us to develop myelin repair treatments – and these could be effective for everyone with MS.

Step 3: protect nerves from damage

We need to make sure that our nerves are happy, healthy and protected from damage. And this is even more important when myelin isn’t around.

Researchers are using their knowledge of nerves to design new ways to keep them alive and healthy. They’re aiming to find treatments that can prevent nerve loss, which could slow or stop the progression of MS.

We’re funding seven projects to help us on our way to having neuroprotective treatments for MS.

We’re excited because clinical trials of potential treatments for people with progressive MS are already underway. This includes our MS-SMART trial, as well as drugs like simvastatin.

Two things stand out for me in all this. First is the amount of work being funded by the UK’s MS Society and, second, that Dr Schley used Twitter to make his point.

* * * * *

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

* * * * *

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.

1 Comment »

Government budget disappointment: Extra cash but not enough for health, social care crisis ignored

Chancellor of the Exchequer Phillip Hammond, the UK government minister in charge of the Treasury, is under fire from critics.

Last week, Hammond introduced his budget that included £2.8bn funding for frontline NHS services in England over the next three years. Crucially, though, and in my view shamefully, he did absolutely nothing to tackle the country’s care crisis.

social care

Chancellor Phillip Hammond leaves 11 Downing Street. He holds his budget speech in the traditional red briefcase.

Instead, he seems to be waiting for the social care consultation which the government has promised to publish next summer. This is planned to address the issue of long-term funding, but why wait? Let’s bring it forward six months.

Campaigners have welcomed the extra cash for the NHS but say it falls woefully short of what is needed.

Leading campaign group the MS Society said the £2.8bn over three years is well short of what’s needed. The society’s website says leading health experts estimate the NHS needs £4 billion next year alone to meet demand. What’s more, it says the funding gap is set to reach £20 billion by the end of 2022. So, Hammond’s extra cash is clearly a case of too little, too late.

MS Society chief executive Michelle Mitchell said: “This budget will come as a huge disappointment to people with MS. The additional NHS investment, while welcome, falls far short of the extra £4 billion a year health leaders say is needed. This risks undermining not only recent exciting developments in MS treatments, but also quality and access to NHS services.”

Social care system cannot cope

Turning to the care crisis, she said: “Unless the health and social care funding gap is addressed, people with MS, their families and carers will continue to pay the price for a system unable to cope with demand.”

social careThis year, the society has campaigned together with health sector leaders, and other charities, calling on the government to urgently address the care crisis.

The government’s consultation may be next summer, but that does nothing to help people who need care today, it says.

Currently, it’s estimated that the social care funding needs an additional £2.5 billion for 2019/20 alone. However, the chancellor missed the opportunity to prove this government is committed to fixing the social care system.

Chancellor Hammond also announced a £1.5bn package to improve the much-criticised Universal Credit system. This includes the removal of the seven-day waiting period at the beginning of a benefit claim. What this means is that entitlement to Universal Credit will start on the day of the claim.

The MS Society says: “While this is a welcome change for new claimants to Universal Credit it doesn’t help anyone currently struggling with other benefits.

“We know people living with MS have lost at least £6 million per year in reduced support since Personal Independence Payment (PIP) was introduced.” Now, don’t get me started on PIP.

* * * * *

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

* * * * *

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.

 

No Comments »

Care homes for older people housing younger people, some with MS

The MS Society has discovered 3,000-plus people under the age of 65 living in care homes for older people. And that includes younger people with MS.

So, almost one in seven younger adults in UK residential care could be living in homes not designed for them. Yes, it’s amazing, shocking, but true.

It’s clear that homes dedicated to older people don’t always meet the needs of younger disabled adults.

Living with significantly older people, often with complex conditions, can take its toll on younger adults with MS.  Such conditions tend to negatively affect their quality of life and mental health.

careThe society says that people with MS should have a choice of care, whatever their age and needs.

On its website, the society declares: “This is yet another example of a social care system in crisis.

“As part of our campaign to End the Care Crisis, we’ve launched a new report showing people with MS aren’t getting the essential support they need.”

Care crisis: What needs to be done

MS Society recommendations on the steps that need to be taken to improve the system are also included in the report.

It says:

We did a survey with the Care and Support Alliance (CSA) to find out how the British public feel about the care crisis. We asked them what they would expect if they needed social care themselves.

We found out:

 Six out of ten (61%) people believe the care younger disabled adults receive is embarrassing

 Three quarters (75) say they would be scared for their future if they became unable to look after themselves

 Eight in ten (79%) want the government to urgently fix the social care system

  People rank social care as the second most important issue facing our government compared to issues on a similar scale

care

MS Society chief executive Michelle Mitchell (pic: MS Society).

MS Society chief executive Michelle Mitchell said: “In 20 years, we’ve seen at least 10 government consultations and reviews on social care, but haven’t seen the change we urgently need.

“Our polling shows the British public is appalled by government inaction and believe our country must do better to support those who need help to live independently.”

* * * * *

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

* * * * *

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.

1 Comment »

MS Society calls for legalisation of medicinal cannabis and dispels 5 myths

Legalise medicinal cannabis is the call of the MS Society as it tries to persuade the UK government to act. And, as part of its campaign, the society is seeking to dispel some popular misconceptions. It has also produced its own report on the use of medicinal cannabis in treating MS.1

Oomsn its website, the society says that with so much information “swirling around the internet”, it’s hard to be sure what’s true and what’s not. That’s why it decided, in its own words, “to bust five common myths about cannabis and MS”.

These are the misconceptions that the society has highlighted:

1. ‘Cannabis for medicinal use’ means any kind of cannabis

This can be confusing, as the media often refers to both licensed cannabis products and the illegal drug as ‘medicinal cannabis’.

What medical professionals usually mean by ‘medicinal cannabis’ or ‘medical cannabis’ is cannabis products licensed as medical treatments. So, for MS, that means Sativex, which is specifically licensed to treat muscle spasms and stiffness in MS. Journalists or other people using the phrase could mean cannabis used for any medical purpose.

We’re calling for the Government to legalise cannabis for two medicinal purposes: to treat pain and spasticity when other treatments haven’t worked.

2. Cannabis has never been legal for medicinal use

This isn’t true. Thanks to the evidence, countries including Germany and Canada have already made cannabis available for medicinal use, and Ireland is considering it.2 This means people in those countries can get it safely on prescription and be confident about the quality and doses of what they’re taking.

We want the UK Government to do the same, so people with MS can treat their symptoms safely.

3. Smoking cannabis is as safe as taking Sativex

medicinalWrong – evidence shows that smoking cannabis can be harmful to people with MS, especially when it’s mixed with tobacco. Unfortunately, smoking has also been shown to speed up how quickly people develop secondary progressive MS.

As cannabis is illegal there’s no guidance about doses or quality either, so you can’t be sure if what you’re smoking is safe.

4. Cannabis is natural, so it’s better than pharma drugs

That’s not how it works. One of the main active ingredients in cannabis is THC (tetrahydrocannabinol). THC is ‘psychoactive’ and can do lots of things – including alter your mind and make you hallucinate. If you or your family have a history of mental health problems (such as schizophrenia or bipolar disorder), using cannabis can trigger these or make them worse.

5. Cannabidiol (CBD) products will help my MS

CBD is the other active ingredient in cannabis. It’s not psychoactive like THC and has anti-inflammatory, anti-tremor and anti-spasmodic properties.

At the moment, there’s not enough evidence to show that products containing just CBD, like cannabis oils, can help MS symptoms. And currently there are no CBD products licensed to treat MS symptoms.

But the evidence shows that cannabis containing both CBD and THC could work for some people with MS to help with pain and spasms. It is thought that the ratio of THC to CBD determines the level of psychoactive vs. therapeutic effects of cannabis.

That’s why we think the UK Government should change the law to make cannabis available for medicinal use to help people with MS treat pain and muscle spasms, where other treatments have not worked for them.

I have never tried cannabis in any form, so cannot give any recommendation one way or another. However, I have looked into the issue and can say that I’d be prepared to give medicinal cannabis a try.

1 Cannabis and MS – The role of cannabis in treating MS symptoms.

2 The use of cannabis has been legalised in more countries than the society says, as well as some US states.

* * * * *

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

* * * * *

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.

2 Comments »

U-turn over plans to delay treatment for people who are newly-diagnosed with MS

Multiple sclerosis campaigners, led by the MS Society, are celebrating a significant victory.

They opposed plans to delay access to disease modifying therapies (DMTs) for people newly diagnosed with MS in Northern Ireland. This is a UK area where certain powers, including responsibility for the National Health Service, are devolved from central government.

And, the decision-makers listened.

u-turn

U-turn is a cause to celebrate (Pic: MS Society).

In the face of mounting objections, including a petition, Belfast Health and Social Care Trust (BHSCT) has made a U-turn. It dropped its highly controversial plans.

An MS Society statement says the announcement (to drop the plans) is a victory for the MS community. It says thousands of people came together across the UK to oppose the plans.

It all started in August, when the BHSCT announced plans to delay access to DMTs as part of a range of cost-saving measures.

“The BHSCT holds the budget for the prescribing of all DMTs, so this would have led to delays in accessing DMTs for people across the country,” the MS Society explained.

Since then, 5190 members of the MS community signed the society’s petition asking the BHSCT to reconsider its position.

U-turn prompted by protests

The MS Society went to public meetings to raise concerns It held its own meeting with representatives from all political parties. And, it spoke in the media about how the plans would affect the MS community.

Also, the society submitted a written response to the BHSCT’s consultation on the proposals.

Although the action taken by the society is to be congratulated, and the U-turn is most welcome, the fight goes on. Many other services used by people with MS remain at risk.

For example, also in Northern Ireland, you have to wait too long to see a consultant neurologist. Meanwhile, across the UK, people with MS need to fight for the treatments, care, and support they need. That shouldn’t happen, it is ridiculous. It is plainly wrong. We need another U-turn here

We, people with MS, must stand up to fight for our health, our rights. And I commend the MS Society’s call to action. “It’s so important that, together, we continue to speak up for MS,” it says.

 * * * * *

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

* * * * *

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.

No Comments »

Steps to Overcoming MS but MS Society warns diet is unproven

Overcoming MS (OMS) is a popular, yet unproven, diet and lifestyle programme for people with MS. And in just under two weeks, on Sunday October 22, you can learn more about it at an OMS conference in Brighton, UK.

OMS

Professor George Jelinek (Pic: Overcoming MS).

Overcoming Multiple Sclerosis claims to promote the integration of diet and lifestyle changes into standard medical management to improve the health and lives of people with multiple sclerosis”. Professor George Jelinek, of Melbourne, Australia, developed the OMS Recovery Programme more than 15 years ago. He received a diagnosis of MS in 1999.

OMS started in Australia and New Zealand. It is a non-profit organization and accepts no funding from the pharmaceutical industry. In 2011, it formed a charity in the UK to with the aim of making the OMS programme available worldwide.

omsThe one-day conference is to include a number of presentations These are to focus on the seven steps of the recovery programme: diet, sunlight and vitamin D, exercise, meditation, medication, preventing family members from getting MS, and doing whatever it takes to overcome MS.

Organisers say the event will be of value to anyone, whether newly diagnosed, new to OMS or someone who has already been on the recovery programme for some time.

OMS step by step

So, what’s in the OMS recovery programme? To summarise:

  • Diet and supplements
    • A plant-based wholefood diet plus seafood, with no saturated fat, as far as is practical
    • Omega-3 fatty acid supplements: Take 20-40mls of flaxseed oil daily; fish oil can be used instead if desired
    • Optional B group vitamins or B12 supplement if needed
  • Vitamin D

    • Sunlight 15 minutes daily 3-5 times a week as close to all over as practical
    • Vitamin D3 supplement of at least 5000IU daily, adjusted to blood level
    • Aim to keep blood level of vitamin D high, that is between 150-225nmol/L (may require up to 10,000IU daily)
  • Meditation

    • 30 minutes daily
  • Exercise

    • 20-30 minutes around five times a week, preferably outdoors
  • Medication

    • In consultation with your doctor, if a wait and see approach is not appropriate, take one of the disease-modifying drugs (many may not need a drug, and drug selection should be carefully weighed against side effects)
    • Steroids for any acute relapse that is distressing
    • One of the more potent drugs if the disease is rapidly progressive

The MS Society, on its website, has expressed a note of caution. It says there is no conclusive evidence of the benefits of the proposed diet, a key component of the programme. It warns that the diet may not provide enough protein and may be too low in energy.

omsThe society says: “The OMS diet recommendations are similar to the Swank diet. It advocates cutting out dairy and meat, and reducing fat intake – particularly saturated fat. It also recommends supplementation, particularly with omega 3 (in the form of fish oil or flaxseed oil) and vitamin D if your exposure to sunlight is limited.

“Research into this diet has not provided conclusive evidence of its benefits. However, as with the Swank diet, following the OMS programme is not likely to be considered bad for you.

“You should make sure you’re getting enough protein in your diet, through eating plenty of fish, beans or pulses. Likewise, the diet may be low in energy, so it may not be suitable for you if you have high energy needs or you are already underweight,” says the society.

* * * * *

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

* * * * *

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.

4 Comments »