Banned, but why? Facebook gives no reason


I am prompted to write that, despite an absence of new posts, I am as well as I can be. I have no health problems beyond multiple sclerosis.

Messages have reached me, asking if everything is ok, such as this one:

Hi, it’s (name removed for privacy). Facebook has not had any of your current writings, so I want you to know you are in my prayers.

The absence of my posts was not caused by any personal reasons but was enforced by Facebook itself. I use it to send my posts to groups of which I am a member but, three times in as many weeks, I have been interrupted by a message saying: “You are restricted from joining and posting to groups that you do not manage until (date and time).

No reason is ever given and the powers that be won’t discuss it with you. You can click on ‘Appeal’ but experience tells me not to bother. Why? Because, if you do, no reply is ever received and the restriction, effectively a ban, is just made longer. The fact is simple, Facebook has the ability to do what it likes and we, its users, have no rights to protest or even ask questions. [I feel another ‘restriction’ will be coming for expressing this truth].

Back until banned again

I explained the situation to everyone who contacted me and this was one response I received via Messenger:

That’s awful. I’m technology challenged, but I knew something was wrong. Thanks for letting me know.

I wish you could sue Facebook for discrimination.

God bless you and your family. Stay strong. Thank you for all your hard work.

Right now, I am back and will continue to bring you news and views – until Facebook decides to ban me again.

Whether you have MS or another health problem, if you have a disability, 50shadesofsun.com is here for you. And, there is no greater support you can give than to share my posts far and wide via every social media.

You can also join a Facebook page that I do manage (and so are exempt from any ban), such as 50shadesofsun or Living with multiple sclerosis.

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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 for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Government minister’s welfare benefits statements prove economical with the truth

Sarah Newton, one of two ministers of state at the department for work and pensions (DWP), was in the centre of a heated debate in the House of Commons, this week.

The Canary, a website dedicated to independent campaigning journalism, reported that she made some staggering claims. It went on to question how many of them were true. Those of us with disabilities, resulting from MS and other causes, know that the answer will be ‘very few´.

The debate was about a report by the UN committee on the Rights of Persons with Disabilities (UNCRPD). The report said successive UK governments had committed “grave” and “systematic” violations of disabled people’s human rights. The chair of the committee said the government had created a “human catastrophe” for disabled people.

newton

Sarah Newton MP.

In the debate, Labour accused Newton and the government of making disabled people a “forgotten class”; of allowing the DWP to ‘endlessly mistreat’ them, and of creating a “national scandal”.

Newton dismissed Labour’s assertions. She said: “Let’s actually deal with the facts of the situation, and stop this really quite irresponsible talk that we hear in the chamber today…”

But, it seems that Newton and “the facts” don’t go hand in hand. No surprise that DWP politicians are always ready to brush unpleasant, but genuine, facts under the carpet. They are past masters of spouting their own version of the “truth”.

The Canary went through her comments and fact-checked them. Of course, it found that Newton statements were, to put it politely, economical with the truth.

Time to check the genuine facts

So, let’s look at the real truth!

CLAIM: Newton: “I utterly refute the allegations that have been made today: that we are discriminating against disabled people; that we are systematically undermining and violating their human rights, or worst of all that we are targeting their… welfare support…”

FACT: The High Court ruled in December 2017 that aspects of the Personal Independence Payment rules were “blatantly discriminatory”. It then ruled again on June 14 that aspects of Universal Credit’s implementation had been ‘discriminatory’.

Additionally, a tribunal found the DWP had discriminated against one of its own workers, who was disabled, awarding him £26,000 in damages.

The Canary also pointed out that besides the UNCRPD, the UK government has been accused of breaking international treaties and violating disabled people’s rights by the UN Human Rigth Committee on Economic, Social and Cultural Affairs and the European Committee of Social Rights (part of the Council of Europe).

Meanwhile, the UNCRPD report said government policies had become “life-threatening to many disabled people”.

CLAIM: Newton said that the government was “very disappointed” that the UNCRPD did not take on board… the evidence that the government gave them. They did not acknowledge the full range of support.

FACT: The UNCRPD report was overarching in the evidence it took on board. However, it condemned the UK government’s attempts to misrepresent the impact of policies through “unanswered questions”, “misused statistics”, and a “smoke screen of statements”.

Equality Act fails disabled people

CLAIM: Newton said:I want to reassure everyone that we have very strong legislation… on our statute book to protect disabled people – that’s through the public sector equality duty in the Equality Act 2010…”

FACT: Just one example of the implementation of the Equality Act 2010 failing disabled people is the UK rail network. Disabled people’s organisations, trade unions, and commuter groups have argued that the train operator’s policies breach the act. Their claims have been largely ignored.

Newton then had to answer a question from Labour’s shadow secretary for work and pensions, Debbie Abrahams. Abrahams asked why the government had not done a cumulative impact assessment of all welfare reforms.

CLAIM: Newton said: “We do undertake a cumulative assessment of reforms, each fiscal event. This is because we want to be as transparent as possible regarding the cumulative distributional impacts of government policies, including welfare reforms, tax changes – direct and indirect – and public spending changes.”

FACT: This is not the same as doing an impact assessment of the combined effect of every cut, reform, and change on disabled people. The government is merely giving itself individual snapshots.

Poverty level  figures not all they seem

CLAIM: Newton said that the proportion of people in a family where someone is disabled… in relative poverty has not risen since 2010.

And that the proportion of people in a family where someone is disabled, who are in absolute poverty, is at a record low…

FACT: The government admits that changes it made around 2011, to how disabled people are identified, could affect poverty measures. Also, the government does not include in its poverty figures the average additional £570 a month costs disabled people face because of their impairments. Moreover, the government’s measure for absolute poverty is different to that of the UN, and different again to a measure the House of Commons Library used in a briefing paper.

Newton’s claim of no rise in poverty is even different to the DWP’s own figures, which show the number of disabled people in relative poverty has risen since 2010 [source: the Joseph Rowntree Foundation].

CLAIM: Newton said: “These allegations, that we are driving people to the food banks and forcing people into destitution, is simply an irresponsible statement.

FACT: The government’s National Audit Office says Universal Credit is driving people to food banks and throwing them into rent arrears.

CLAIM: Newton said: “We’re spending over £50bn a year on benefits to support disabled people and people with health conditions.”

FACT: The amount the government spends on disability benefits is actually £39bn. Full Fact says the £50bn figure is from 2012, and includes adult social care, free travel, and home adaptations

UK actually fifth in G7, not second

CLAIM: Newton said that the £50bn was: “up by £7bn since 2010, and it’s around 2.5% of GDP – over 6% of the government’s spending. Now as a share of our GDP, our public spending on disability and incapacity is the second highest in the G7…”

FACT: This is a selective use of statistics, as it also includes some NHS spending. The Office for National Statistics reported on EU “social protection” figures. The UK actually spends less than Norway, Germany, Spain and France on disability benefits.

CLAIM: Newton said: “There is no freeze on the benefits that people with disabilities have received…”

FACT: Tax-free disability benefits like the Personal Independence Payment (PIP) have been rising. But the “work-related activity” part of Employment and Support Allowance has been frozen since 2015. 391,000 people, many of them sick and disabled, are in this group.

CLAIM: In closing Newton summed up by accusing Labour and the Scottish Nationalist Party (SNP) of fearmongering and not dealing in facts.

She said: Who’s going to suffer? Who’s going to suffer from what… we’ve been hearing from the opposition today?

FACT: It is going to be disabled people and their families, who are going to be frightened – frightened to come forward and get the benefits that are there for them; frightened to come forward and get the support that’s available to them.

The Canary said: “Newton either displayed staggering delusional behaviour or wilful ignorance.” I agree but would describe both as shameful. Worse, the same descriptions can be applied equally to the government as a whole.

Interestingly, but unsurprisingly, The Canary says it contacted the DWP for comment but received no response by the time of publication.

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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 for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Invest more in innovation and development say wheelchair users in international study

Millions of people have lower-limb paralysis – the most common causes being strokes, spinal cord injury and multiple sclerosis.

Now, users of wheelchairs and other devices to assist lower limb mobility say they need more money to be invested in innovation and development. And, as a wheelchair user, I agree totally.

innovationThis is the result of an international study of wheelchair users across the UK, USA, Japan, Brazil and India. It was carried out by ComRes on behalf of the Toyota Mobility Foundation.

Key findings include:

     Nine out of 10 (89%) wheelchair users experience pain as a result of their mobility device;

       Nearly a quarter (23%) say they have been declined entry to public transport because of their mobility device;

       43% say they have been unable to find an accessible toilet when they needed one;

        30% of say they have felt frustrated because the design of their mobility device felt outdated.

The study also found that wheelchair users experience repetitive strain injury (RSI) and pressure sores (29% and 22% say this respectively).  

The survey found that nearly a third (30%) of wheelchair users say they have felt frustrated because they design of their mobility device feels outdated.  The top five improvements that would be most helpful to them, they say, are to enable them to:

      move around faster (41%);

        perform regular day-to-day tasks more easily (37%);

        feel more relaxed & comfortable with a device that feels more natural and like an extension of themselves (37%);

        feel more confident and able to socialise and meet with friends (34%);

        feel a sense of spontaneity, freedom and independence (32%).

Innovation: Where we go from here

People with lower-limb paralysis are now being encouraged to take part in a global conversation about the types of mobility technology innovations they would like to see, using the hashtag #MyMobilityUnlimited.  

Toyota Mobility Foundation’s director of programs Ryan Klem said: “This research expresses the urgent need for innovation in this area. It’s surprising that with all the technology we have today, we still have people in constant pain as a result of their mobility devices. The comments we are receiving through social media show the kinds of developments that people want to see, and we hope the Challenge will result in genuinely life-changing technologies.”

Nesta Challenge Prize Centre’s Charlotte Macken commented: “While the focus of this Challenge is lower-limb paralysis, we absolutely do expect that the technology developed as a result will be transferable and have the potential to improve the lives of a much wider group of people. This Challenge is about achieving impact, and for that reason, we needed to narrow the focus. However, we recognise that people have a wide range of mobility needs and hope to be able to help them too.”

For more information please visit mobilityunlimited.org

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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.

* * * * *

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 for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stat

Government withdraws disability benefit legal appeals, at last

A government disability benefits boss has withdrawn another two legal appeals which now opens the door for more claimants to receive the benefits to which they are entitled.

withdrawn

Esther McVey, work and pensions secretary.

The appeals, by the UK’s Department for Work and Pensions (DWP), were withdrawn by the department’s secretary of state Esther McVey MP. Previously, she cancelled plans to challenge a legal judgment, prompting a major review of thousands of decisions about disability benefits cases.

Now, the DWP is once again on the back foot – and claimants are set to reap the benefit.

The department had appealed to the Upper Tribunal and the Court of Appeal after the First-Tier Tribunal ruled that two claimants with chronic conditions were entitled to the Personal Independence Payment (PIP). Ms McVey has now withdrawn both appeals.

Barrister Tom Royston, of Garden Chambers North, represented both the claimants. Since Ms McVey withdrew the appeals, Mr Royston has issued a damning analysis of the cases.

He criticises successive Work and Pensions secretaries for trying to enact and enforce a major change in the law without parliamentary approval.

Appeals cause unacceptable wait for justice

Further, from the dates the now-withdrawn appeals were lodged, the DWP has forced disabled people to wait for a final decision. That’s a wait of two years in one case, and three years in the other.

I can understand that nothing could be done while legal action, the appeals, were pending. But why has it taken so long to withdraw them? One was due to be heard this month. It’s crazy. It’s an unacceptable wait for justice.

Online campaigning journalist Mike Sivier, writing on Vox Political website, said: “Ms McVey, and successive Work and Pensions secretaries before her, has been gambling that her victims – yes, victims; and I think even that is too mild a word – would run out of stamina and let her have her way. It is a classic bullying tactic.”

I agree. The DWP should be ashamed of its actions. Esther McVey should be ashamed she took so long to withdraw the appeals. Prime minister Theresa May and her government should be ashamed of presiding over such a farce.

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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 for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Government department’s “no information” claim is just a feeble cover-up

A government department responsible for disability benefits has effectively admitted that vital documents were not shown to an expert hired to conduct a review. The papers link its controversial ‘fitness to work’ test with deaths of benefit claimants.

The UK’s Department for Work and Pensions (DWP) claims it has no information about whether the reviewer was shown copies of peer reviews and two prevention of death reports. Of course, if they had been given to the reviewer, the action would have been noted.

no informationIts “The information is not held” response to a Freedom of Information request, I contend, is an admission of guilt. Those of us who have personal experience of the DWP simply won’t be convinced that it is telling the truth. We see it for what it is, a feeble attempt at a cover-up.

Actions are always recorded but any lack of action isn’t – as there is nothing to note. Therefore, ‘no information’ means the documents were NOT shown to the reviewer. And that is unforgiveable.

The FOI request was submitted by the Disability News Service. Its full story can be read here.

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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.

* * * * *

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 for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

A helping hand so readily offered to wheelchair-users

I never cease to be surprised by the willingness of people to offer a helping hand.

Regular readers will know that, because of mobility problems resulting from multiple sclerosis, I use a wheelchair.

Several times recently when out and about in my wheelchair, while Lisa stayed at home, members of the public have been read to offer assistance.

It is never strange when store staff lend a helping hand but I really don’t expect it from fellow shoppers – but that is what has happened.

a helping handIn a local supermarket, other shoppers have:

  • Unloaded my shopping cart;
  • Helped pack the goods into the bags;
  • Taken my shopping to my car;
  • Placed the bags into my car.

On Friday, I needed to go to the bank. Not a difficult job in most circumstances, even when using a wheelchair – but it is not so easy in our local town, Cuevas del Almanzora. Here, in sunny Andalucía in the south of Spain, we have to overcome problems associated with accessibility ramps.

Access can benefit from a helping hand

They do exist but the engineers who make them often miss the fact that they are supposed to drop down enough to make a smooth transition from road to sidewalk. Here, the ramps often leave a small kerb (curb in American English) to overcome. Then there are thoughtless drivers who park across the ramp, making it useless.

Of course, there are places where accessibility rams just don’t exist. Outside the bank being one such example. So, on Friday, I chose the lowest possible step up and, by tilting my wheelchair backwards, managed it. But a passing motorcyclist stopped and rushed to help – perhaps unnerved by the awkward backwards tilt. Still, he didn’t leave m side until I was safely in the bank.

Returning to my car after venturing out, it is relatively easy for me to place the wheelchair inside but it does require some effort. And that’s why, I am always grateful when a passer-by offers to help. Yes, I could persevere and complete the job by myself and, more often, it is what I do. However, when help is offered, I don’t want to appear rude by turning down their kindness.

My desire for independence does not stop me accepting offers of assistance. Do you feel the same way?

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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.

* * * * *

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 for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Charity AIMS to help MS patients to have HSCT

A new multiple sclerosis charity has appeared in the UK, inspired by one successful HSCT treatment, provided free of charge by the country’s National Health Service (NHS). It is the first charity dedicated to autologous hematopoietic stem cell transplantation (HSCT) for MS patients living in the UK.

The treatment was given to James Coates two years ago. His story can be read here.

AIMS

Alison and James Coates.

James and his wife Alison are now behind the launch of the AIMS (Auto Immune and Multiple Sclerosis) charity.

Alison explains: “James was lucky enough to access HSCT on the NHS, and we wanted to give something back. We were also very frustrated at reports of misinformation given to patients by their neurologists and other MS agencies.

“Such misinformation includes a much higher mortality rate than is accurate, and that HSCT wouldn’t be suitable for them because they have progressive MS. In fact, HSCT halts progression in the overwhelming majority of patients irrespective of MS type. There are also general inaccuracies about the criteria for NHS acceptance – and that’s still happening every day.

“We wanted to do something to put the record straight and all our trustees feel very strongly about that,” she said.
AIMS itself received confirmation of its registered charity status on April 11 this year (registered chatity 1177907). Its primary objective is to signpost to qualified medical specialists during the patient’s research phase, with a view to providing grants as its funding income is developed.

Alison says: “Essentially, AIMS intends to signpost for other hematologically-routed AI diseases (ie: CIPD, Lupus and Systemic Scleroderma) as these conditions, in addition to MS, are treated with HSCT at Clinica Ruiz in Puebla, Mexico, and AA Maximov hospital in Moscow, Russia. Further recommended clinics may be added later.

Main focus on MS

“Our main focus is on multiple sclerosis patients. We plan to offer both financial support AND signposting to UK-based MS patients who are accepted for HSCT in the UK or at either of the above facilities, as MS is the disease that is currently treated within the UK on the NHS.”

Every charity has to have trustees and, for AIMS, those trustees rightly include both James and Alison. But the couple’s involvement doesn’t stop there. James heads the charity’s finance team, while Alison leads the publc relations and media team.

On December 1, AIMS charity will be holding its first major fundraiser – a super black-tie dinner, with entertainment. It will be selling tables of 8 and 10 for an event that will double as its ‘launch party. I know your support will be very much appreciated, so check out the charity’s Facebook page at https://www.facebook.com/aimscharity.org/.

James says: “We have run smaller fundraisers – our Trustee Paddy has participated in Tough Mudder for us, and we’ve received a number of donations – the December 1 dinner will be our first big event.
“We are hoping to raise upward of £50,000 annually, which would help many people to access HSCT and support them in terms of their travel expenses.”.

Looking to the future, AIMS proposes to support the travel expenses of UK-based MS patients. Initially, they must have been accepted for HSCT treatment in the UK, Clinica Ruiz in Puebla, Mexico and AA Maximov hospital in Moscow, Russia.

AIMS is quite clear that it will only give grants towards travel costs and funding will only be allocated to patients who have secured a place at a qualifying facility. It will not contribute towards the treatment itself.

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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.

* * * * *

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 for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.