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News and Opinions about MS, Health & Disability

Cambridge scientist ‘on verge of curing multiple sclerosis’

A researcher from Cambridge University, UK, has made a discovery which could lead to a cure for multiple sclerosis. What’s more, she says it can tackle other diseases too.

LIF

Dr Su Metcalfe of LIFNano (Photo David Johnson).

Dr Su Metcalfe was working at the university’s department of surgery when she made her big breakthrough. “I was looking to see what controls the immune response and stops it auto-attacking us,” she told the Cambridge News.

It all revolves around a stem cell particle called a LIF.

She explained: “I discovered a small binary switch, controlled by a LIF, which regulates inside the immune cell itself. A LIF is able to control the cell to ensure it doesn’t attack your own body but then releases the attack when needed.

“That LIF, in addition to regulating and protecting us against attack, also plays a major role in keeping the brain and spinal cord healthy. In fact, it plays a major role in tissue repair generally. It turns on stem cells that are naturally occurring in the body.”

It is a natural regenerative medicine, and plays a big part in repairing a damaged brain.

Stopping and reversing disease

“So, I thought this is fantastic. We can treat autoimmune disease, and we’ve got something to treat MS, which attacks both the brain and the spinal cord. It’s a double whammy that can stop and reverse the autoimmunity (disease), and also repair the damage caused in the brain.”

There was a problem, though. The LIF only survives outside the cell for 20 minutes before it is broken down. This meant there was not enough time to deploy it in a therapy.

The answer turns out to be nano-particles.

The particles were developed at Yale University, USA. Yale is listed as co-inventor with Su, but LIFNano has the worldwide licence to deploy them.

Su says: “Nano-medicine is a new era, and big pharma has already entered this space to deliver drugs while trying to avoid the side effects. The quantum leap is to actually go into biologics and tap into the natural pathways of the body.

“We’re not using any drugs, we’re simply switching on the body’s own systems of self-tolerance and repair. There aren’t any side effects because all we’re doing is tipping the balance. Auto-immunity (diseases) happen when that balance has gone awry slightly, and we simply reset that. Once you’ve done that, it becomes self-sustaining and you don’t have to keep giving therapy, because the body has its balance back.”

LIF clinical trials

LIFNano has already attracted two major funding awards, from drug firm Merck and government agency Innovate UK. Su has recruited chairman Florian Kemmerich and ceo Oliver Jarry, both with experience in the pharma sector. The company hopes to attract more investment, with the aim of starting clinical trials in 2020.

“The 2020 date is ambitious, but with the funding we’ve got and the funding we’re hoping to raise, it should be possible,” says Su.

What’s in store for LIFNano after MS?

“MS is our key driver at the moment, but it’s going to be leading through to other major auto-immune disease areas,” Su answers

“Psoriasis is high up on our list, and diabetes is another. Downstream there are all the dementias, because a LIF is a major health factor for the brain. So, if we can get it into the brain we can start protecting against dementia.”

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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 Features Writer with Medical News Today. 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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Stem cell trial patients are leading a normal life

This is my column, today, in MS News Today. I thought you’d like to know about it:

Stem Cell MS Patients Lead Normal Life Thanks To aHSCT Procedure

People with MS who were involved in a long-term clinical trial are out and about enjoying a full and normal life with no signs of the disease. This follows their recovery from the stem cell transplants involving aggressive chemotherapy, or aHSCT as the procedure is known.

Results of the clinical study reached major news sources, including Multiple Sclerosis News Today on Friday after first being unveiled in The Lancet.

The 24 multiple sclerosis patients recruited for the trial were severely disabled but, with the exception of one who died, are now walking, working, kayaking, and skiing.

The trial is the first in the world to show complete long-term stopping of relapses of the debilitating disease and …

 

read more here: stem-cell-ms-patients-lead-normal-life

 

 

MSNT strapline copy

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‎Self-advocate: Take control of your own treatment

self-advocate

Becoming a self-advocate may be the best way of getting the treatment any MS patient may want.

Stem cell transplants are known as aHSCT or just HSCT, and interest in them as a therapy for MS has never been higher. First there were stories from the annual meeting of the Consortium of Multiple Sclerosis Centers at the beginning of June. Then, a week later, The Lancet published the results of the first clinical trial to prove long-term benefits of what has been a controversial treatment.

This transplant therapy is not claimed to be a cure but, having read the report and acknowledging it has dangers (as do Disease Modifying drugs), I’d say it is the nearest thing we have to a cure at the moment. But I have to emphasise I am not a doctor – my opinion is that of a career journalist who happens to live with MS.

Many neurologists seem reluctant to embrace the new therapy, possibly because it is not led by their speciality in the field of medicine. Instead it is in the hands of haematologists and oncologists because, after all, it started as a cancer treatment and does include high doses of chemotherapy.

For that or for other reasons anyone with MS may have difficulty in getting their neurologist to agree to put them forward for this process even if the talk today is all about ‘shared’ decisions.

No, there is absolutely no way that I am going to knock shared decisions – after all, that means the doctor and patient have agreed on the best way forward. If that is the case, that is great – but what if agreement is not reached and they have shared disagreement instead?

Well, people with MS have to be their own self-advocate. They need to remember that this unwanted disease is in their bodies; they have the ultimate right to determine how it should be treated.

Not everyone with MS will be suitable candidates for HSCT but, if they are, then no neurologist on Earth can be allowed to stand in their way.

With this in mind, I was interested to see the following on one of the social media:

We should all present our neurologists with a letter, stating that while they withhold HSCT from us, we consider them personally responsible for any further disease progression. Here is a first draft, for comments please? Imagine if 100,000 of these were presented!

LETTER TO NEUROLOGIST,

cc ASSOCIATION OF BRITISH NEUROLIGISTS

Dear Dr Blah-Blah,

As you know my next appointment with you is scheduled for xx/xx/16.

I am writing to advise you in advance, that I would like you to assist me in pursuing a Haematopoietic Stem Cell Transplant. I attach details of recent submission by Professor Paolo Muraro, together with commentary by Professor Gavin Giovannoni, relating to HSCT for MS being the best way to achieve no evidence of disease activity (NEDA). I am no longer prepared to take inferior disease modifying medications.

My EDSS is currently measured at x.x and I feel it is only fair to advise you, that I will be holding the neurolgogy profession including yourself, fully accountable for any further disability that accrues from this point forward. To aid with analysing any increased disability, I have today been independently filmed walking 20m, which will then be compared to future timed 20m walks.

Should you wish to bring my next appointment forward, I believe we would all consider that to be a step in the right direction.

Yours sincerely,

MS Patient

The content of that letter has been reproduced word for word and, while it may not be how I would phrase it, it makes its point – and is a great example of the self-advocate that is so needed today.

 

Related articles:

Stem cell clinical trial is real, not ‘false hope’    June 12

Long-term clinical trial Proves stem cell therapy that destroys immune system Does Stop MS    June 10

 

 

MSNT strapline copy

 

 

 

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New clinic in Mexico to open to treat chronic diseases – but including a very different stem cell treatment

Dr Jose Romo

Dr Jose Romo

There is a second clinic being set up in Mexico that claims it is going to be offering various treatments, including stem cell therapy, at a fraction of the price of Clinic Ruiz.

It is important to realise, though, that the new clinic’s stem cell treatment is not HSCT.

Treatment at the new clinic will be led by Dr Jose Romo who has many years of experience as a physician and has, since his start in conventional medicine, made much progress in the field of holistic medicine specialising in the treatment of many chronic illnesses. Independent research shows that Dr Romo is, in fact, highly qualified and experienced in many areas of medicine.

Starting on March 24, he will be offering a 21-day programme which will include intravenous GcMAF, ozone therapy, stem cell treatment, Papini magnetic therapy among many other methods of treatment.

It shoud be noted that GcMAF, although widely used in the holistic field is controversial in that it does not have the approval of the USA´s FDA and has led to raids by the FDA as well as by UK health authorities.

Placements are limited and the clinic cannot guarantee places to everyone at the moment, however, as the facilities grow, it claims more placements will be able to be offered in the very near future. As every case is unique, all cases will be reviewed following a detailed questionnaire to determine eligibility for the programme that includes treatment and therapeutic measures, but also training and education.

Amanda Mary, holistic health adviser and cancer researcher at the new clinic, La Flor De La Salud (The Flower of Health), says: “Please send me an email if you would like further details. I will be handling all administrative matters as well as questionnaire submissions, so contacting me directly would not only expedite the process, but also ensure your consideration for the program. email mary@mothernatureandyou.com Destination Puebla, Mexico.”

The clinic’s website is http://www.flordelasalud.com/en

For Multiple sclerosis patients, La Flor De La Salud uses cbd oil from the cannabis plant, ozone, B12 intravenous, GcMaf, clean diet and Papimi. A 40% reduction in symptoms is the target. Stem cell treatment is available using donated cells and no chemotherapy drugs. Amanda Mary says: “Chemotherapy is mustard gas, it does not show enough good results with MS.”

Interesting, but I don’t think veterans of HCST would agree.

Requirements for acceptance do not include a history of having taken DMDs but you must not have undergone chemotherapy or radiation within three months and you must have some level of mobility.

The programme is scheduled to begin on March 24 2016. It includes a minimum 14-day stay, up to 21 days, at the facility at a price of €2700 (EUROS), $3000.00 (USD), £2100.00 (GBP). Accompanying guests only pay 40% of the programme fee to cover meals and accommodation. After eligibility requirements are met, 50% payment is required to secure your place.

Price Includes: A healthy meal plan for the duration of the programme; Daily consultations with Dr. Romo or holistic medical adviser, Amanda Mary; Accommodation in a private suite next door to the clinic; Supervising protocols, nursing staff and 24-hour care; and a full training course during your stay as well as full access to the upcoming Online Video Course at healingoracle.

Products for protocols will be billed accordingly and separately from above fee. Once your questionnaire is completed, the clinic will advise on protocols that will be offered and send prices of the products. Although there are charges for the products, administration of those products is included in the price of the programme.

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Gwen Higgs, HSCT for MS advocate, ‘This is Your Life’ (part two)

Gwen Higgs underwent HSCT in Moscow in 2014. Today, she is a committed advocate for the use of stem cell therapy to treat all types of multiple sclerosis. She is a voluntary admin on many HSCT Facebook groups and is always ready with words of encouragement and reassurance. This is part two of Gwen’s story, if you missed part one on Saturday you can catch up here: http://50shadesofsun.com/?p=1499

The Maximov centre in Moscow.

The Maximov centre in Moscow.

Faced with negativity towards HSCT from her neurologist, who would not even look at the data she had put together, Gwen felt forced to make her own way. So, it was back to the computer and the internet.

She said: “I discovered that (at that time) the only two places in the world which would treat PPMS with HSCT were in Israel and Russia. The cost of treatment in Israel was about quadruple of that in Russia, which seemed an impossible amount of money to find!  Luckily, I found blogs from patients who had had treatment in Russia – including one by the very first international patient to be treated there, who is also English! – which were all very positive.

Dr Denis Fedorenko.

Dr Denis Fedorenko.

“I spoke to Dr Fedorenko, the HSCT haematologist in Moscow, and he agreed that there was a strong possibility that HSCT would help me. I formally applied and was accepted for treatment, which I finally had in July/August 2014.

“HSCT in Moscow is entirely inpatient, from the extremely thorough pre-treatment testing until you are discharged, so I decided to go alone, partly to keep costs down.”

Asked how she would describe her experience in Moscow, Gwen smiled before saying: “It was like being in a cross between a Butlin’s holiday camp and a British hospital in the 1950s!  The hospital staff were extremely efficient and caring – one only had to wait minutes for a response to calling them.”

There were about a dozen other international patients who arrived or left during the 35 days that Gwen was there – American, Australian, Norwegian – all at different stages of treatment, all supportive of each other. “I had got to know some of them beforehand, thanks to social media – so it was in many respects a meeting of like-minded friends. We are still in regular contact. I was also in daily contact with family and friends at home, thanks to the wonders of Skype, etc,” she said.

“I felt totally safe and confident in the care provided in Moscow – I think hospitals here could learn a lot,” she added.

The cost of HSCT in Moscow in 2014 was US$40,000. (about GB£25,000 at that time).  The only other costs Gwen says she had on top were air fares and a visa, which cost a couple of hundred pounds.

Gwen during her treatment.

Gwen during her treatment.

As to the treatment and its effects, besides the temporary loss of her hair, Gwen recalls: “As I was actually going through HSCT, I realised that I could think clearly and that although I was tired, it wasn’t like the overwhelming fatigue I’d had for years. It was like a veil being lifted!

“Then, after HSCT I slowly realised I did not need to restart the bladder control medication, that I had been dependent on previously, as I was now able to control my bladder without it. It wasn’t perfect, but it was a lot better. Gradually, I noticed that I was choking and coughing much less frequently while drinking and eating than before – and today it is a rare occurrence.”

As she regained strength after HSCT, Gwen’s friends and family started pointing out changes they noticed. She said: “I could carry a cup of tea without spilling it. I could walk from one room to another without holding onto a wall for balance. I could stay awake all day. I could hold a conversation with more than one person at a time. I could walk out of the house without having to wear a foot brace.”

Her recovery is not complete but then no-one is claiming that HSCT is a cure. Gwen says: “My mobility is still fairly poor. I use a walking stick outside the house and I can’t get very far without my legs seizing up. BUT – it’s not worse than before HSCT, and I’m certain that it would have been, without the treatment.

“After my return to the UK, I was monitored by a haematologist for three months who was pleased with my recovery and I haven’t had to return to Russia for follow- up checks – updates are by email,” she said.

 

 

 

 

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Gwen Higgs, HSCT for MS advocate, ‘This is Your Life’ (part one)

There can be no doubt that Gwen Higgs is a remarkable woman who has fought MS, has undergone HSCT and is today a voluntary advocate for that treatment, including being an admin of several Facebook pages on the subject. She is always there with answers to questions and kind words of reassurance when needed.

Today is the first of two blogs that, together, will tell Gwen’s story.

gwen higgs2a

 

The Life of Brian Gwen – part 1

There’s no embarrassment or coyness about Gwen. It is said that no true gentleman would ask a lady her age but my years as a journalist have killed off any qualms I may have had – so the question was asked.

She answered immediately, “I am 56-years-old and married for more than 33 years. My husband and I have three grown up sons. My original training and work was in scientific roles before becoming a stay-at-home mother for many years. After that, I worked in, and was a Governor of, a large comprehensive school – until ill-health retirement about three years ago.

Gwen lives in Witney in the UK county of Oxfordshire and was diagnosed with PPMS in 2009 at the John Radcliffe Hospital in Oxford. She described that moment: “It wasn’t a shock – more of a relief that I wasn’t imagining all of the symptoms which made daily life so difficult!

“The symptom which made my life most difficult was the dreadful, unrelenting fatigue. I woke up exhausted, had to rest after having a shower, had to rest after getting dressed. I’d come from work and just lie down until it was time to start all over again. I’d get through the day on sheer force of will.

“Then force of will wasn’t enough – I just could not keep going, I needed to rest………

I found it difficult to concentrate, couldn’t formulate my thoughts, started losing words, forgetting names………the infamous brain fog made daily functioning – let alone working! – extremely difficult.

“My walking was worsening. I had to hold onto walls and furniture to get from A to B. My legs would just seize up and stop working after a short distance. Walking like a drunk as a staff member in a school is not a good look!

“I started having bladder problems. On one memorable occasion I had a catastrophic bladder failure in a School Governors’ meeting – that was totally humiliating, to say the least. I was having problems swallowing food and drink – I’d frequently choke, which was both frightening and embarrassing if in company. I avoided going out to eat, or even drinking water during meetings at work, for fear of the coughing fits which would invariably ensue.

“Eventually I had to accept that it was better for all concerned if I left my job. That was very hard – I loved my work,” she added.

After giving up work, Gwen realised that her life was disappearing before her eyes. Her world had shrunk dramatically. She explained: “I could no longer drive to visit sons at University, or friends and relations further afield. I had to plan carefully before even popping to a friend’s house for coffee, because it would mean not being able to do anything else that day. My husband was having to take over most of the household tasks on top of his full-time work.

Desperate for help, Gwen took to the internet and, at last, found a glimmer of hope for the future.

She said: “I came across some blogs by MS patients who had a treatment called HSCT (haematopoietic stem cell transplant) which had halted their progression, and they had even had some improvements.

“I spent much time researching. I read every published research paper I could find which had any connection to HSCT, however tenuous. My scientific background helped enormously with the research; I was used to the terminology, understood how clinical trials worked and was used to deciphering the statistics.

“Finally, I decided that as my condition was worsening and there was no way that would change without intervention and, being told that no disease modifying drug is effective for PPMS, the best option was to have HSCT and at least not get any worse.

Gwen recalled: “I approached my neurologist and asked for her advice about HSCT. She was horrified; I almost laughed out loud at her expression.  She did everything in her power to talk me out of even considering HSCT. She told me it was dangerous, it wouldn’t work, etc, etc.

“But it became obvious during our conversation that she didn’t actually know what the procedure involved, nor did she want to hear it from me, or even look at the published research that I had printed out and taken for her. She said she’d consult her colleague who was ‘in charge of MS’.

“It was obvious to me that I was going to have to rely on myself, if I was to get treatment. So, back to the internet,” said Gwen.

 

Part 2 will follow Gwen’s life from this point, through her successful treatment, right up to today.

 

 

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HSCT, sunshine, MS and other musings

gwen higgsbernie sandersHCdavid cameron_edited Gwen Higgs, Bernie Sanders, Hillary Clinton and David Cameron

Gwen’s story, warts and all

HSCT, stem cell therapy, and its use to treat multiple sclerosis patients has been on television, in publications and even this blog during the second half of January. In just a couple of days, or so, I shall be bringing you the story of Gwen Higgs from diagnoses, through her battle against both MS and her neurologist, her treatment in Russia, and how she is today.

It is an honest story that does not gloss over her struggles or her embarrassment. Be sure not to miss out.

So this is winter?

Weather here in the south of Spain continues to be most pleasant. In the last two days, Lisa and I have enjoyed lunch outdoors on the terrace while we soaked up the sun;  so good for my Vitamin D.

Forecasts for Thursday and Friday don’t look as good with highs of only 12° and 14°C/ 54° and 57°F respectively – but warmer weather should return on Saturday.

I am still not really acclimatised yet but certainly enjoying the sunshine in which it is hot enough to sunbathe. It just seems ridiculous to be able to do that in the so-called winter months of January and February.

Back to Malaga

Our car was collected today and taken back to the automatic gearbox specialist in Malaga but, this time, they brought us a courtesy car. So there is no need now to rely on neighbours’ goodwill to take us shopping and what not.

Six coin tosses decide Iowa Democratic winner

So six of the Iowa State Democratic party delegates as elected by the caucus were decided by coin tosses as both Hillary Clinton and Bernie Sanders achieved equal votes in six of the areas being counted.

Now if six dead heats aren’t coincidental enough, the fact that Hillary won all six coin tosses is just too much for me. Don’t worry, I am sure conspiracy theories will soon arise.

In Iowa, Sanders won 21 of the delegates without a coin toss; Hillary gained 22 INCLUDING all six dead heats decided by the flip of a coin. Now tell me that Hillary won in Iowa. If just one toss had gone to Sanders, then he would have won 22-21. Enough said.

UK Euro battle lines were drawn early

On the eastern side of the Atlantic, UK Prime Minister David Cameron is hailing the outcome of his negotiations with Europe as successful. Whether they are, or aren’t, is another matter.

What everybody needs to realise, however, is that the ‘stay’ and ‘leave’ campaigns for the UK’s promised referendum on membership of the European Union were already decided before the results of the renegotiation were known.

Those determined to stay, and those determined to leave, had declared their positions and would be campaigning for victory in the referendum. In reality, the renegotiations did not matter at all.

 

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Can Multiple Sclerosis be stopped? Maybe SOME can

Prof Basil Sharrack (left) and Prof John Snowden have a clinical partnership of neurology and haematology.

Prof Basil Sharrack (left) and Prof John Snowden have a clinical partnership of neurology and haematology.

Last night on the UK’s BBC television, its leading documentary programme Panorama aired an episode entitled Can you stop my Multiple Sclerosis?

It followed four people with relapsing remitting MS as they were given bone marrow transplants that are more usually reserved for cancer patients. I say ‘transplant ‘ but the stem cells are taken from the individual patient, so there is no risk of rejection.

The treatment – known as an autologous haematopoietic stem cell transplant (HSCT) – aims to destroy the faulty immune system using chemotherapy. It is then rebuilt with stem cells harvested from the patient’s own blood. These cells are at such an early stage they’ve not developed the flaws that trigger MS.

Now, as my MS is not the relapsing remitting type, this treatment would not be right for me but, as I watched the programme, it was a delight to see some real progress being made treatment and remarkable improvement in the lives of those for whom it is suitable.  If a similar treatment could help me, would I take it? Once it had been proved to be safe, yes of course – wouldn’t you?

The treatment is being pioneered in the UK by two consultants at Yorkshire’s Royal Hallamshire Hospital where 20 patients have been treated so far. Neurologist Prof Basil Sharrack said: “To have a treatment which can potentially reverse disability is really a major achievement.”

Prof John Snowden, consultant haematologist, said: “The immune system is being reset or rebooted back to a time point before it caused MS. It’s clear we have made a big impact on patients’ lives, which is gratifying.”

The treatment involves intensive chemotherapy, so patients are warned that there are side-effects such as nausea and hair loss.

Prof Richard Burt, of Northwestern University, Chicago, carried out the first HSCT for MS in 1995. He said: “There has been resistance to this in the pharma and academic world. This is not a technology you can patent and we have achieved this without industry backing.”

A study published last year involving MS patients in Chicago, USA, showed significant reductions in neurological disability and, for some, the improvements persisted for at least four years – although there was no comparative control group. The outcome of a more detailed international trial – which will report in a couple of years – could determine whether the stem cell transplant becomes a standard NHS treatment for many MS patients.

A note of caution was later voiced by Dr Emma Gray, head of clinical trials at UK’s MS Society. She said: “Ongoing research suggests stem cell treatments such as HSCT could offer hope and it’s clear that in the cases highlighted by Panorama they’ve had a life-changing impact.

“However, trials have found that while HSCT may be able to stabilise or improve disability in some people with MS it may not be effective for all types of the condition.”

Dr Gray said people should be aware it was an “aggressive treatment that comes with significant risks”, but called for more research into HSCT so there could be greater understanding of its safety and long term effectiveness.

 

 

 

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