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50shadesofsun

News and Opinions about MS, Health & Disability

HSCT: Denis Fedorenko, a Family Man Who ‘Instills Confidence’

This article, written by me, first appeared on Multiple Sclerosis News Today website.

For a man who is at the forefront of HSCT treatments given to patients with both relapsing and progressive types of multiple sclerosis, Dr Denis Fedorenko is a modest and quietly spoken family man.

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Blogging has become great occupational therapy

Ten years ago this November, my working life stopped. Disability made it impossible to continue. I just could not travel to work and back every day, and climb up stairs, potentially several times a day. There were no offices on the ground floor and no elevator; so stairs were the only option.

I really did nothing for the next 8½ years, nothing that is except fall out of love, fall in love with Lisa, get divorced and then get married to Lisa; no, not much at all, really. Oh, yes, and there was a diagnosis of a heart problem to go with multiple sclerosis and epilepsy.

But having said all that, it was in June last year that the decision was made to put my career in journalism to good use to write a blog. Nothing great was planned but it started on August 1 with more of a whimper than a growl. It was launched as a lifestyle blog and each post was about whatever took my fancy. Howver, view figures, the number of views per day, were very low.

Bio pic Modern Day MSThen, January arrived and everything changed. What had started as just ‘something to do’ became much more. I had learned what people like to read and, just as importantly, how essential social media is when it comes to marketing your blog. And that’s how my lifestyle blog was transformed into one specializing in all aspects of health and disability with more than 10,000 views per month being consistently achieved and exceeded since the beginning of February.

It was just like doing a part-time job, with no pay, from the comfort of my own living room.

And there it might have stayed if it wasn’t for Mike and Chris. Mike had been following my blog for a while, unbeknown to me. In early June, he sent me a message on LinkedIn and asked if I would write one blog a week for multiplesclerosisnewstoday.com. Of course, I agreed.

In fact, I wrote two blogs that first week and, having seen them, Chris, Mike’s boss. Asked me to write three a week. Soon it was five and I was thoroughly enjoying myself – without leaving the confines of my armchair at home in sunny Andalucía, Spain.

Oh, yes, and this blog of mine, 50shadesofsun.com, is still being produced.

Now, besides writing, I am checking out and recruiting more bloggers for the 40 disease-specific websites that come under the umbrella of BioNews Services. Together, it is a great form of occupational therapy; just what is needed.

For once, my physical disability has been coupled with my journalistic experience and ability to great effect. Who’d have thought this was possible 10 years ago? Certainly not me, that’s for sure.

 

 

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To Fight MS, Drink Four Cups of Coffee a Day?

This article, written by me, first appeared in Multiple Sclerosis News Today.

Ready to fight MS? Well, you can start first thing every day. So, how do you start your day — a coffee maybe, or a great cup of tea? Tea is my choice but I also enjoy a magnificent cup of Spanish coffee.

 

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May uncaring,  Green self-interested, Crabb disgraced

As the dust begins to settle after the shock referendum result in the UK that says that Britain should leave the European Union, how do those with disabilities stand?

Well, in the medium-term, the country will still be in the EU until two years after clause 50 is triggered and that looks set to not happen until the end of the year. And that means we remain protected by European laws relating to the treatment and employment of disabled people.

In the short-term, however, there may be some difficulties ahead.

PM Theresa May: Uncaring.

PM Theresa May: Uncaring.

Both Theresa May, the new prime minister, and Damien Green, the third work and pensions secretary this year, have records of voting to reduce spending on welfare benefits as well as other so-called reforms aimed at saving government money – irrespective of the likely effect to the disabled and vulnerable

In May’s case, that is despite having her vicar father in a wheelchair when she was about eight years old and her mother living with multiple sclerosis.

Both her parents died within a year of each other when Theresa was in her mid-20s. Any hope that such experiences in her early years might have engendered some compassion seem, however, to be sadly misplaced. She is just another uncaring politician.

Damien Green: Self-interest.

Damien Green: Self-interest.

Green has never rebelled and has always voted the way the government demanded, showing he has a distinct disinterest in serving the people, just his party. And, from that faithful obedience, he has also served his self-interest well, leading to this cabinet appointment.

Stephen Crabb’s high-flying political career seems to have crashed and burned, at least temporarily. This was the guy plucked from his role as parliamentary under-secretary of state at the Welsh Office to take over as Welsh Secretary on July 15, 2014. He was then promoted to work and pensions secretary on March 19 this year, following the dramatic resignation of Iain Duncan Smith.

Then, following David Cameron’s decision on June 24 to stand down, he declared himself as a candidate for leader of the Conservative party but dropped out of the race after finishing fourth of five in the first round of voting.

Stephen Crabb: Disgraced.

Stephen Crabb: Disgraced.

This week, Crabb withdrew from consideration as a government minister after a newspaper exposed him for sexting, or sending sex text messages. In his letter to Mrs May, he said he was standing down “in the best interests of his family”.

He was disgraced and his career was significantly damaged after The Times alleged that he had been sending sexually explicit messages to the WhatsApp messaging service.

According to the newspaper, Crabb, 43, a Christian and a married father of two, had a series of flirtatious and sexually charged exchanges with a young woman during the run-up to the EU referendum. In a late-night exchange last month, he is alleged to have told her that he wanted to kiss her “everywhere”.

In this blog on July 1, I said that Crabb was unfit to head the work and pensions department, let alone the entire government. Now I have to question his suitability for any public office, including that of a back-bench MP.

 

 

 

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HSCT for MS from the Inside: A Patient’s View

 This article, written by me, first appeared in Multiple Sclerosis News Today on July 12.

Anyone considering HSCT (hematopoietic stem cell transplant) for MS might like to know what they can expect. But let’s remember that, while such transplants for MS patients are available in clinics worldwide — from Mexico to the Philippines and Singapore, and from Israel to Russia — HSCT remains an experimental treatment that lacks formal approval from health authorities.

Of course, the very first thing to do is choose where you prefer to be treated and to make contact with that clinic. If Moscow is the choice you make, you will then receive an application form that asks for a great deal of information about your state of health — and that’s all health, not just your MS details.

This information helps the doctors make decisions about whether you are suitable for the therapy and could mean that you may be asked to supply further information. Only after the preliminary procedure is completed and you are determined eligible for the therapy, will you receive notification with a date for your diary.

But being accepted does not mean that you are added to the end of a long line. “We want to handle more difficult, more urgent cases quickly,” said Dr Denis Fedorenko, who is responsible for autoimmune diseases and transplants at the AA Maximov Center in Moscow.

Julia Browning flew to Russia from her home in the Bahamas in mid-April for HSCT, a procedure that costs about $45,000 (an increase of $5,000 since 2014). I asked her to explain the procedure from a patient’s viewpoint.

Julia Browning.
Julia Browning.

“When you first arrive, there are three days of testing before you meet Dr Fedorenko to see if you have the final approval for treatment,” she said. “I found that a nervous time, the waiting. When he told me that my treatment could go ahead, I just burst it tears. Dr Fedorenko held me until I calmed down.”

Julia had this advice for future patients: “Once in Russia, relax, believe in the treatment and have faith in doctors and hospital staff.” And, I suppose that applies to other clinics, too.

Then the work really begins: Four days of stem cell stimulation in combination with steroids, and two G-CSF stimulation injections daily; antacid pills before breakfast and dinner; insertion of a neck catheter followed by an X-ray; and collection of stem cells (2+ million per kg of body weight).

‘New Life’ birthday celebrations

Once sufficient stem cells have been collected, which can take one or two days, the neck catheter is removed and a new one inserted for chemotherapy. This is followed by four days of chemotherapy.

“You then get one to two days of rest with supportive medication infusions twice daily and you do need it,” said Julia.

Dr Denis Fedorenko with his assistant Anastasia Panachenko. Anastasia is also a former patient because of MS.
Dr Denis Fedorenko with his assistant Anastasia Panchenko, who is also a former MS patient.

Then, at long last, the “Day of Transplantation” arrives. Julia smiled, remembering. “New Life birthday celebrations follow the transplantation,” she said.

“Next, time away from other patients. Isolation. The number of days depend on each patient’s blood work.

“After release from isolation, it’s almost time to say goodbye to the doctors, staff and fellow patients and head for home. I say ‘almost’ because you receive one infusion of Rituximab after recovery of leukocytes and before hospital discharge,” Julia said.

But that’s not the end, as each patient is given instructions to help continue recovery. The instructions cover such things as diet, exercise, and medical checkups, including MRI scans. “Yes, all that,” she said, “and Dr. Fedorenko and Anastasia are only a phone call away.”

Julia is one of about 500 autoimmune disease patients, mostly MS, who have received transplants in Moscow. Dr. Fedorenko said: “Approximately 400 MS patients have been given HSCT, divided 50-50 between Russian and international cases.” Another 100 patients with diseases such as rheumatoid arthritis, systemic lupus erythematosus, Crohn’s disease and chronic inflammatory demyelinating polyneuropathy (CIDP) have also been treated.

The Moscow clinic claims that its HSTC success rate is over 90%, and treats both RRMSand progressive MS patients. Fedorenko said progressive MS is clearly more aggressive and difficult to treat.

How well have those patients done since their transplants?

“We started with our first MS patients in 2005 and we now have patients who have shown no sign of relapses for 10 years. We have seen relapses after seven and eight years, but these are very rare,” Fedorenko said.

HSCT for MS patients set to almost double

Now, the center is set to expand. News of the Moscow center’s expansion plans were unveiled to Multiple Sclerosis News Today by Dr. Fedorenko: Ten new patient rooms will be opened during August and September. “We’ll then be working on two floors,” he said.

Currently, the A.A. Maximov Hematology and Cell Therapy Department of the National Pirogov Medical Surgical Center can handle up to 15 patients at any one time. Of those, just 10 are patients living with one of many autoimmune diseases, including multiple sclerosis. The remaining five rooms are for cancer patients.

Although the new rooms won’t be working at full capacity straight away, they will all be used in January.

“From October some of the new rooms will be in use but in the New Year we’ll be able to take seven more autoimmune cases a month,” said Dr. Fedorenko, close to doubling the number of people who can be treated at any one time.

The clinic staff includes five doctors, 46 nurses, and 29 other staff members.

 

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Looking forward with an occasional backwards glance

My way of living with multiple sclerosis, and a wheelchair, is to hold firmly to my mantra. And that is always to look forward and concentrate on the things I can do and get as much enjoyment out of that as is humanly possible.

But, just once in a while it can do some good to look back, not to mourn the present but to celebrate the major landmarks in your life. So here goes!

1953       Unbelievably, I have a childhood memory while just a few months old. My mum left me in my pram while she went into a shop. How times have changed.

1957       Aged 4, started in my first school. It was while at this school, aged about 8, I decided on a career in journalism.

1964       Aged 11, started in high school.

1968       Broke my ankle in two places in a cycling accident. In plaster for six weeks.

1969       Took examinations, got most but not all needed to be a reporter.

1970       Got my last necessary qualification and started work as a journalist.

19.82. aged 29. Had MS but didn't know it

1982. aged 29. Had MS but didn’t know it.

1975       Met the young woman who would become my first wife. My football (soccer) team reached the prestigious FA Cup Final but lost.

1977       Married for the first time.

1985       Noticed a problem with my left leg, had various tests but no problem identified

1992       Moved from London to North Wales

1994       Joined the staff of a local newspaper group, becoming both sub-editor and Rural Affairs Editor.

1999       Named as ‘Wales Farming Journalist of the Year’ at the Royal Welsh Show.

2002       Diagnosed with multiple sclerosis but was able to continue working.

2006       November the day after my 54th birthday, my mobility had progressed to the state that I had to give up going out to work.

2007       Despite my disability, I managed to visit Canada and visited the Niagara Falls, and my first (and only) baseball game.

2008       Unhappy in my first marriage, I turned to playing an online game.

2009       While playing the game, I met and fell in love with the woman who would become my second wife.

2010       I met Lisa face to face for the first time. If there had been any doubt, it had now gone. We were hopelessly in love.

2011       What a year.  Lisa and I were both divorced from our partners and we then married on a beach in Florida. Two weeks later I had to fly back to the UK alone as Lisa had to wait for her visa.

2012       Lisa got her visa on her birthday, Valentine’s Day and just five weeks later she arrived at Manchester Airport. A big kiss and “Welcome home” and we sped off.

2013       Our first two cruises together, first to the Norwegian Fjords and Arctic Circle and then around the western Mediterranean.

2014       Cruise bug well and truly caught, we went around Hawaii and stopped off in New York City on the way home.

2015       We booked a transatlantic crossing as soon as we got home. A couple of weeks later we decided that we wanted to leave the grey British skies behind us. So, I suggested that we move to Spain. In the end, we left our rented flat in October, sailed aross the atlkantic for eight days, holidayed in the United States for 9 days, flew back to the UK for two nights in hotels and then flew to Spain. And in between all that I started my own blog.

2016       The blog really took off this year and towards the end of May I was asked to write blogs for multiplesclerosisnewstoday.com, and I agreed.

Not a bad life really, despite having MS.

 

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MS is linked to Glandular Fever, I have no doubt

This article, written by me, first appeared on Multiple Sclerosis News Today website.

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In my mind, MS is linked to glandular fever. From personal experience, there is no room for doubt of any kind.

Trouble is, though, that my experience and belief is not proof. And that is why I find that efforts to establish a definite link between glandular fever, often known as the kissing disease, and MS is an exciting area of research.

So, you can just imagine my delight in seeing that research into this is now in its second year of a two-year project in Australia.

Early last year, MS Research Australia awarded a $150,000 grant to support a project being conducted at Murdoch University, as was reported in Multiple Sclerosis News Today in March 2015.1 The project is aiming to expand scientific knowledge about the possibility or probability that MS is linked to glandular fever and the Epstein-Barr Virus (EBV).

shutterstock_350858348EBV is known to cause glandular fever, otherwise known as infectious mononucleosis.2

The research grant was awarded to David Nolan, an adjunct associate professor at the Institute of Immunology and Infectious Diseases (IIID), and is funding two years of investigation.

Research is focusing on MS and the infectious condition known as glandular fever following encouraging results on the link between MS development and viral infections.

My personal interest in this research is because I firmly believe that glandular fever did trigger MS in me.

Let me explain. When I was finally diagnosed with MS in 2002, I was 49 years old. However, the neurologist who gave me the news said that he had gone back through my medical records and found evidence of MS existing as long ago as my 20s. Early to mid-20s to be exact.

Remarkable ‘coincidence’

Thinking nothing of it at the time, not then being aware of any possible link, I had glandular fever at the age of 21, almost 22, and evidence of MS in my early to mid-20s. Isn’t that a remarkable coincidence? If you believe in coincidences, that is!

A clinical link may not be scientifically proven in my case but, if you were me, would you need any further proof? I most certainly don’t!

Now I am waiting to see what the Murdoch University investigation proves.

As previously reported in Multiple Sclerosis News Today, Prof. Nolan spoke about the research. He said: “It appears that there is a strong association between the Epstein-Barr virus and MS but it’s too early to say if it is the cause.

“We know that the Epstein-Barr virus specifically infects immune cells that produce antibodies, B cells, essentially hiding away within the immune system. For reasons that are still poorly understood, it seems that those affected by MS have an abnormal response to this virus and that the nervous system might be unintentionally targeted by the immune system as part of this response.”

Nolan and his research team are searching for infected B cells while attempting to develop a targeted treatment to address them. The main purpose of the project is to find a way to stop disease progression through novel therapeutic approaches that can address the underlying mechanisms of the disease.

During these two years, researchers are focusing on Epstein-Barr virus infected cells. “The research funding gives us a chance to make a real step forward in understanding the basis of Multiple Sclerosis and therefore improving both disease monitoring and treatment,” added Dr. Nolan.

 

1MS Research Australia Funds Project on MS and Epstein-Barr Virus, MS News Today.

2Patient – Trusted medical information and support and many other sources.

 

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Welfare system needs urgent reform, says new report

Here’s something for the UK’s incoming Prime Minister Theresa May to get stuck into – after all she is promising a better Britain.

Speaking outside the Houses of Parliament, after having been declared the new leader of the Conservative party, she said; “We need a new vision for our country. A vision that works not just for privileged few but for every one of us because we going to give people more control over their lives.”

family-on-balcony-696x462Now, a new Index on the effectiveness of different welfare states by the International Longevity Centre, has warned that ‘endemic squalor’ in Britain means the UK must learn from better performing European countries if it to successfully tackle poverty and social exclusion.

Despite having the 5th largest economy in the world, the UK is ranked just 15th among 23 European countries on the ILC-UK’s Poverty and Social Exclusion Index and 14th on the ILC-UK’s Housing Quality Index, mainly due to high levels of housing cost overburden among the young and the working age population.

Worryingly, the UK has one of the highest rates of housing cost overburden, with 18-24 year olds being the hardest hit when compared to other age groups.

Source: Britain’s ‘mediocre’ welfare system in need of urgent reform

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MAY-be not the best choice for Prime Minister

Much to the dismay of many, including people with disabilities and the vulnerable, the British Conservative party has settled its leadership contest. They managed that when of one of the only two remaining candidates withdrew.

Now only Theresa May remains. She is already the party leader and at some point on Wednesday afternoon the UK should have a new prime minister.

theresa may.And, while current Prime Minister David Cameron had said that he would be prepared to continue until September, he now finds he is surplus to requirements- He plans to formally tender his resignation to the Queen after Prime Minister’s Questions on Wednesday.

Then the Queen will send for Mrs May and ask her to form a government. The UK’s second female prime minister will then set about putting together her first cabinet and it will be interesting to see who is IN, who is OUT and who manages to stay put.

So far, in her speeches, Mrs May has portrayed herself as a caring one-nation Conservative who cares about the poor and vulnerable but, before we get too carried away, let’s take a look at her voting record on welfare and benefits.

  • Generally voted for reducing housing benefit for social tenants deemed to have excess bedrooms (which opponents describe as the ‘bedroom tax’).

My verdict: UNCARING.

  • Consistently voted against raising welfare benefits at least in line with prices.

My verdict: UNCARING.

  • Generally voted against paying higher benefits over longer periods for those unable to work due to illness or disability.

My verdict: UNCARING.

  • Generally voted for making local councils responsible for helping those in financial need afford their council taxand reducing the amount spent on such support.

My verdict: UNCARING.

  • Generally voted for a reduction in spending on welfare benefits.

My verdict: UNCARING.

  • Generally voted against spending public money to create guaranteed jobs for young people who have spent a long time unemployed.

My verdict: UNCARING.

It seems that Britain has just swapped one uncaring Tory for another.

  • Voting record by www.theyworkforyou.com

 

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Mood swings and MS

 

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