Foyle Branch News & Research 2008
- Children, MS and Tysabri (Posted: 12 December 2008)
- I've Got Nothing To Lose By Trying It - a guide (Posted: 12/11/2008)
- Link Reported between Childhood MS and Vitamin D Deficiency (Posted: 09/10/2008)
- More on Low Dose Naltrexone (LDN) (Posted: 11/09/2008)
- Further Tysabri Problems (Posted:05/08/2008)
- New Evidence of Effect of Smoking on Progression of MS (Posted:31/07/20)
- Mercury Amalgam Fillings (Posted: 25/06/2008)
- Fingolimod News (Posted: 10/06/2008)
- LDN Update (Posted: 10/06/2008)
- Bone Marrow Transplant (Cloud with Silver Lining" (Posted: 10/06/2008)
- Coffee, Mice & MS (Posted: 08/05/2008)
- Noni Juice (Posted: 06/05/2008)
- Disappointing result from Sativex Trial (Posted: 06/05/2008)
- Wheelcahir User Refused Pub Entry Wins Compensation (Posted: 15/04/2008)
- Further Strong Evidence of a Link between MS & Chickenpox/Shingles (Posted: 13/03/2008)
- Pregnacy, Delivery & Birth Outcome at Different Stages of MS (Posted: 01/03/2008)
- Tysabri Update (Posted: 01/03/2008)
- US Electronic Aid to Rectify 'Drop Foot' (Posted: 26/02/2008)
- Benefits of Exercise Programme on MS Quality of Life - an Irish study (Posted: 23/02/2008)
- Tysabri Approval in NI From April 2008 (Posted: 15/02/2008)
- Married Couple Both Diagnosed with MS (Posted: 07/02/2008)
Items posted 2008
Children, MS and Tysabri
MS used to be regarded as a disease that affected mainly young adults but more recently it is diagnosed in an increasing number of children and adolescents. Virtually all drugs used in the treatment of MS have been developed and tested on adults. Their safety, effectiveness and suitability for children has had very little research.
Tysabri has now been made available for treatment of relapse remitting MS in adults in very specific circumstances where other treatments have proved ineffective and where the patient has been clearly advised of the risks involved. (More information available on this page at Further Tysabri Problems ).
The authors report that no relapses occurred during that period and no new lesions occurred. Neither were there any adverse reactions when doses were adjusted for body weight.
The authors concluded that tysabri was effective and well tolerated in the pediatric patients with RRMS who did not respond to other treatments and that, in their view, it is a promising second-line therapy for pediatric patients with RRMS.
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I've Got Nothing To Lose By Trying It
Sense About Science is an independent charitable trust. It responds to misrepresentation of
science and scientific evidence on issues such asNICE Guidance for Electrical Stimulation Treatment of Drop Foot
scares about plastic bottles, fluoride, MMR
vaccine, genetic modification, stem cell research and radiation among many others. It works
with scientists and civic groups to promote evidence and scientific reasoning in public
discussion.
It has published a guide recently in association with the MS Society, Motor Neurone Disease Association, Alzheimer's Society, Parkinson's Disease Society and the British Neuroscience Association that explains how to tell the beneficial from the bogus in the face of the miracle cure stories, new wonder-drugs and breakthrough therapies that are increasingly promoted.
Among comments published on the Sense About Science website is the following from Phil Willis MP, Chair of the Innovation, Universities, Science and Skills Select Committee: "The cruellest deception for a patient with chronic illness is the promise of a cure based on empty hope not evidence. The publication of 'I've got nothing to lose by trying it' is an inspired attempt to empower patients to evaluate so called 'miracle cures' with evidence based advice."
A PDF copy of the guide can be downloaded from the Sense About Science website.
TopMore News on Low Dose Naltrexone (LDN)
A couple of items on LDN has recently been in the news. One is a further individual claim of significant benefit in an article Could low doses of a drug for alcoholics ease the agony for sufferers of MS? in the Mail Online in August.
The second is a report in the September online version of the journal Multiple Sclerosis (September 2008, Volume 14, No. 8) of the outcome of a pilot trial at the Institute of Experimental Neurology (INSPE) and Department of Neurology, San Raffaele Scientific Institute, Via Olgettina 58, Milan, Italy; Fondazione Don Carlo Gnocchi, IRCCS, Milan, Italy.
The trial was primarily investigating the tolerability and safety of LDN in 40 persons with primary progressive MS(PPMS). They also looked at spasticity, pain, fatigue, depression, and quality of life.The researchers report that LDN was well tolerated by the participants and that there was a significant reduction in spasticity by the end of the trial..
See also LDN Update(Posted: 10/06/2008) on this page about LDN
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Further Tysabri Problems
Joint developers of tysabri, US company Biogen & Irish company, Elan, have reported two further cases of the deadly brain condition PML (progressive multifocal leukoencephalopathy) among persons with MS receiving tysabri. Little detail is available but one person is reported to be hospitalised and the other is said to be stable at home.
During trials tysabri was very effective in reducing relapses but was withdrawn by the companies while further investigations took place after two persons developed PML and died. The US FDA eventually granted restricted approval in 2006 as reported elsewhere on this page Tysabri given new approval by FDA and restricted approval was granted in Northern Ireland in 2008 Tysabri Approval in NI From April 2008.
The drug is currently not being withdrawn as it is licensed under restricted conditions that include a clearly understood warning of the risks involved. This news is bound to be very worrying for anybody currently on tysabri or being considered for it.
Unsurprisingly, shares in both companies suffered losses of over 30% in response to the news.
NICE Guidance for Electrical Stimulation Treatment of Drop Foot
TopNew Evidence of Effect of Smoking on Progression of MS
Two recent studies report on the effect of smoking on MS. Both have been published online
in the journal Multiple Sclerosis.
One was carried out by a team from the Department of Neurology, Umeà University Hospital, Umeà, Sweden. They investigated the effect of smoking on the progression of MS using a sample of 122 persons who had MS for an average of 6 years. Persons who started smoking before the age of fifteen showed more progression than those who started smoking later and significantly more progression than non-smokers. They concluded that a history of smoking is associated with a worsened progression in MS.
The second study was carried out by a team from the Clinical Department of Neurology, Innsbruck Medical University, Innsbruck, Austria. They studied 129 persons who had a single isolated symptom. This does not always develop into a definite diagnosis of MS. During a follow up study three years later, they found that 75% of smokers developed MS compared to 51% of non-smokers. They also found that smokers had a a significantly shorter time to their next relapse.
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Mercury Amalgam Fillings
Mercury is a naturally occurring very heavy toxic metal that remains in the body for very long periods. It is used, for example, in mercury thermometers and fluorescent lights and can be present in fish from polluted water. There are many anecdotal claims of a link between MS and mercury fillings. Dental associations and amalgam manufacturers insist there is no clinical evidence of a link with MS or any illness although they do not dispute that mercury vapour is released during installation or removal of fillings and during chewing on fillings.
The U.S. Food and Drug Administration (FDA) has issued new advice on mercury fillings following a recent court case in which they were criticised for out of date advice. The advice is very carefully drafted to comply with the decision in the court case but stops short of confirming any definite effect from mercury.
The FDA advises that :-
Dental amalgams contain mercury, which may have neurotoxic effects on the nervous systems of developing children and fetuses. When amalgam fillings are placed in teeth or removed from teeth, they release mercury vapor. Mercury vapor is also released during chewing.It goes on to say that it will examine evidence concerning whether release of mercury vapor can cause health problems, including neurological disorders, in children and fetuses and has invited comments up to 28 July.
It does not, at present, recommend the removal of mercury fillings. Top
Fingolimod News
Fingolimod is an experimental drug for MS taken once daily as a tablet. Results of a phase 2 trial show tremendous promise. Over 70% of persons remained relapse free after 3 years and almost 90% were free of active brain lesions characteristic of MS.
There always seems to be a downside and there is a concern that 7 persons from the original 281
were discovered to have developed skin malignancies. All were localized and were successfully
removed. Top
LDN Update
Varied and impressive claims have been made by individuals and groups over recent years about the effectiveness of Low Dose Naltrexone (LDN) and MSFoyle Forum carries a small number of items posted by members. To date there is little clinical research to support the claims, partly because the large pharmaceutical companies that fund much of the MS research are not interested as LDN is a relatively cheap drug that does not promise large financial returns. Naltrexone at a relatively high dose is approved for treatment for heroin addiction but the claims in relation to MS involve very low doses. Most of the approved therapies for MS involve drugs that dampen down the immune system that is believed to be attacking the body's own myelin. LDN acts by enhancing the immune system. Researchers at Penn State College of Medicine in Hershey recently reported that LDN decreased symptoms of Crohn's disease and improved quality of life for some participants. They plan to proceed to a phase two trial. A clinical trial in Italy is looking at the effects of LDN on spasticity, pain and fatique among persons with primary progresseive MS. So far LDN is well tolerated and preliminary reports suggest significant benefits. A full report is expected to be published soon. Persons considering LDN are advised to discuss it with their medical advisers, particularly if currently on interferon as LDN acts in a directly opposite way to interferon.
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Bone Marrow Transplant News (Cloud with Silver Lining)
Researchers at the University of Ottawa decided to try to understand the development of MS by destroying the bone marrow of persons with MS and then transplanting back some of their bone marrow stem cells. They expected the disease to replicate itself and they hoped to learn more about how it proceeds. Strictly speaking their experiment was a failure but the outcome was like a cloud with a silver lining for most of the participants. The disease did not reappear and has still not done so after 7 years. The procedure is extemely dangerous and unfortunately one participant died. The researchers are still trying to fully understand the outcome.
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Coffee, Mice & MS
Mice with induced EAE(a kind of mouse MS) are used extensively in MS research where positive outcomes can later be trialled on humans.
According to a Washington Post report, research on the effect of caffeine on EAE by a team from Cornell University School of Veterinary Medicine, in Ithaca, N.Y. was reported at the Experimental Biology 2008 meeting.
Mice given the mouse equivalent of about 6 to 8 human cups of coffee a day were 75 percent less likely to develop EAE than those not given it.
Before we start over-dosing on coffee , it must be remembered that EAE is not identical to MS and what has worked on mice in the past has often not worked on humans. Hopefully this preliminary work will be followed by research on humans .
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Noni Juice
Noni juice
is made from the fruit of a Polynesian plant called morinda citrifolia. Individual, anecdotal,
claims have been made about it's effectiveness in dealing with MS but it has
not been tested in clinical trials. The authors of a book intended as a reference
book for health professionals, say that it has some immune stimulating effects but
they warn that it may interfere with the effectiveness of existing MS treatments
that modulate or suppress the immune sysytem. They also indicate that it contains
relatively high levels of potassium and, in high doses, could cause serious kidney problems.
As with LDN, the safest advice for anyone considering taking it is to consult their GP or neurologist, especially if they are on existing treatments.
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Disappointing Results From Sativex Trial
Disappointing results were recently reported from a trial of the cannabis based drug, sativex, and the trial was discontinued. GW Pharmaceuticals, the company involved, said that the difference between the drug and a placebo was not significant. Paradoxically, the company claimed that the results do not detract from earlier claims made about the drug's effectiveness in providing relief from pain associated with MS. Sativex was approved in Canada in 2005 as a treatment for pain in multiple sclerosis patients and it is also available in Britain on special permit. Top
Wheelchair User Refused Entry to Pub Wins Compensation
According to a BBC news report, a wheelchair user who was refused entry to a bar in Lurgan was paid £3000 in an agreed settlement in a case supported by the Equality Commission.
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Further Strong Evidence of a Link between MS & Chickenpox/Shingles
A number of studies have suggested a link between MS and the virus that causes chickenpox & shingles. Research at the National Institute of Neurology and Neurosurgery in Mexico into a link is reported in Annals of Neurology (Ann Neurol. 2008 Feb 27 [Epub ahead of print] ).
The researchers used electron microscopy to check the cerebrospinal fluid from 15 MS patients during relapse, 19 MS patients during remission, and 28 control subjects. They found evidence of particles identical to the virus in the first few days after an acute relapse but not among those in remission or among the control subjects. There was a steady decline in the presence as the persons moved from relapse towards remission. They also used a different method to detect the presence of DNA from the virus with similar results.
They concluded that this was very strong evidence of a link between the virus and MS.
Comment: This very interesting and important research establishes only that a link exists between the two. It does not establish that the virus causes MS. It could equally be the case that the virus is latent and is re-activated by the MS. It should also be remembered that there is evidence that many factors may be involved in MS.
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Pregnancy, Delivery & Birth Outcome at Different Stages of MS
The findings of a Norwegian study published in the Journal of Neurology in February (J Neurol. 2008 Feb 19) will be of particular interest to members who may be considering pregnancy.
The study used the Norwegian MS Registry and the Medical Birth Registry of Norway to compare the effect of MS on births at three different stages of MS. They looked at births among mothers before the onset of MS, between onset and diagnosis and after diagnosis.
They reported that they did not find any differences in the rate of birth complications and interventions between the three groups but they did record a significant lower mean birth weight among the third, (after diagnosis), group compared with that among the first(before the onset of MS) group.
The study did not compare the groups with births among the general population.
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Tysabri Update
The companies producing Tysabri and the FDA(US Licensing Body) have warned doctors not to prescribe tysabri to persons with jaundice or other liver disorders because of a case where serious liver problems appeared within six days of starting tysabri.
As reported on this page, Tysabri Approval in NI From April 2008, two persons with previously benign moles developed melanoma shortly after starting tysabri. Their doctors advise that tysabri should not be prescribed for persons with a family history of melanoma or for those with certain moles.
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Benefits of Exercise Programme on MS Quality of Life
The report of a recent study carried out in Trinity College, Dublin, may be of interest to members, especially those who may become involved in the UU research.
The researchers carried out a randomized controlled trial involving 30 persons from the Dublin area. 24 persons completed the three month trial, 12 in a control group and 12 in the exercise group. The exercises were held twice weekly in a hospital gym and the participants also exercised independently once each week. All 24 were monitored against a number of established scales at the end of the three months.
The authors report a significant improvement in exercise capacity, fatigue and quality of life among the exercise group and this was maintained three months after the trial finished.
The study is reported in the current issue of Clinical Rehabilitation (Clinical Rehabilitation, Vol. 22, No. 3, 206-214 (2008))
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Tysabri Approval in NI From April
Health Minister, Michael McGimpsey, announced NI approval from next April for Tysabri during a visit to the MS Society Centre in Belfast. Tysabri has been shown to be a very effective therapy especially in some cases that do not respond to other treatments. Its use is restricted because of possible deadly side effects , particularly where combined with certain other medications. Nevertheless, its availability within NI is to be welcomed and provides neurologists with an important additional option.
So many developments in relation to MS seem to be followed by some slippage backwards. This is certainly true of tysabri as anyone who has been following its development will know. Now, hot on the heels of the NI announcement, comes evidence of a possible link between tysabri and melanoma. A letter in the current edition of the New England Journal of Medicine (N Engl J Med. 2008;358:647-648) warns of two instances where previously benign moles developed into malignant melanoma soon after treatment with tysabri started. The authors recommend that tysabri should not be prescribed for persons with family histories of melanoma or for those with certain moles.
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- Married Couple Both Diagnosed with MS
According to a report on the DesMoinesRegister.com website, husband & wife, Kent & Linda Gaulter were both diagnosed with MS, 46 year old Kent in 2005 and Linda a year later. The chances of this happening are about 1 in 750,000. You can access the story at the DesMoinesRegister.com site.
Link between Childhood MS and Vitamin D Deficiency
Studies in 2003 and 2004 established links between the level of vitamin D and the incidence of MS. It was suggested that this may help to explain the lower incidence of MS among populations closer to the equator as the main source of vitamin D is from exposure to the sun. Foods rich in vitamin D include cod liver oil and fish with a high fat content, such as sardines, salmon, herring and mackerel. Some cereals and margarines are fortified with vitamin D.
According to a recent report in the Montreal Gazette, a new study by researchers from the University of Toronto in Canada examined the level of vitamin D in children who later developed signs of MS.
They studied 125 children who had MS type symptoms. Twenty were diagnosed with MS within a year. The team found that 68% of those had a deficiency of vitamin D. (Isn't 68% of 20 = 13.6?)
The report also refers to a separate study at Toronto's Hospital for Sick Children that found that 17 of 19 children who had been diagnosed with MS had vitamin D deficiencies.
There does not appear to be any study yet of whether the addition of vitamin D to the diet of persons with MS would impact on the progress of the disease.
TopUS Electronic Walking Aid to Rectify 'Drop Foot'
According to a report on the ABC News website, a woman diagnosed with MS was having considerable trouble walking because of 'drop foot', a conditon all too familiar to many with MS. It is caused by interference with the signals from the brain to the muscles that lift the foot during walking.
A company called WalkAide has developed a small, ipod sized, electronic gadget that is worn strapped to the leg just below the knee. It senses the movements of the leg and sends suitable signals to the appropriate muscles that assist the foot to lift properly.
According to the report. without the WalkAide, the woman limped along with the help of a cane but using the device, she is able to climb stairs with no visible limp.
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