Proventus

Molecular secrets behind halofuginone's power - 2,000-year-old herb regulates autoimmunity and inflammation

2012-02-21T04:24:00.000-08:00

For roughly two thousand years, Chinese herbalists have treated Malaria using a root extract, commonly known as Chang Shan, from a type of hydrangea that grows in Tibet and Nepal.

More recent studies suggest that halofuginone, a compound derived from this extract’s bioactive ingredient, could be used to treat many autoimmune disorders as well. Now, researchers from the Harvard School of Dental Medicine have discovered the molecular secrets behind this herbal extract’s power.

It turns out that halofuginone (HF) triggers a stress-response pathway that blocks the development of a harmful class of immune cells, called Th17 cells, which have been implicated in many autoimmune disorders.

“HF prevents the autoimmune response without dampening immunity altogether,” said Malcolm Whitman, a professor of developmental biology at Harvard School of Dental Medicine and senior author on the new study. “This compound could inspire novel therapeutic approaches to a variety of autoimmune disorders.”

“This study is an exciting example of how solving the molecular mechanism of traditional herbal medicine can lead both to new insights into physiological regulation and to novel approaches to the treatment of disease,” said Tracy Keller, an instructor in Whitman’s lab and the first author on the paper.

This study, which involved an interdisciplinary team of researchers at Massachusetts General Hospital and elsewhere, will be published online February 12 in Nature Chemical Biology.

Prior research had shown that HF reduced scarring in tissue, scleroderma (a tightening of the skin), multiple sclerosis, scar formation and even cancer progression. “We thought HF must work on a signaling pathway that had many downstream effects,” said Keller.

In 2009, Keller and colleagues reported that HF protects against harmful Th17 immune cells without affecting other beneficial immune cells. Recognized only since 2006, Th17 cells are “bad actors,” implicated in many autoimmune diseases such as inflammatory bowel disease, rheumatoid arthritis, multiple sclerosis and psoriasis. The researchers found that minute doses of HF reduced multiple sclerosis in a mouse model. As such, it was one of a new arsenal of drugs that selectively inhibits autoimmune pathology without suppressing the immune system globally. Further analysis showed that HF was somehow turning on genes involved in a newly discovered pathway called the amino acid response pathway, or AAR.

Scientists have only recently appreciated the role of the nutrient sensing-AAR pathway in immune regulation and metabolic signaling. There is also evidence that it extends lifespan and delays age-related inflammatory diseases in animal studies on caloric restriction. A conservationist of sorts, AAR lets cells know when they need to preserve resources. For example, when a cell senses a limited supply of amino acids for building proteins, AAR will block signals that promote inflammation because inflamed tissues require lots of protein.

“Think about how during a power outage we conserve what little juice we have left on our devices, foregoing chats in favor of emergency calls,” said Whitman. “Cells use similar logic.”

For the current study, the researchers investigated how HF activates the AAR pathway, looking at the most basic process that cells use to translate a gene’s DNA code into the amino acid chain that makes up a protein.

The researchers were able to home in on a single amino acid, called proline, and discovered that HF targeted and inhibited a particular enzyme (tRNA synthetase EPRS) responsible for incorporating proline into proteins that normally contain it. When this occurred, the AAR response kicked in and produced the therapeutic effects of HF-treatment.

Providing supplemental proline reversed the effects of HF on Th17 cell differentiation, while adding back other amino acids did not, establishing the specificity of HF for proline incorporation. Added proline also reversed other therapeutic effects of HF, inhibiting its effectiveness against the malaria parasite as well as certain cellular processes linked to tissue scarring. Again, supplementation with other amino acids had no such effect. Such mounting evidence clearly demonstrated that HF acts specifically to restrict proline.

The researchers think that HF treatment mimics cellular proline deprivation, which activates the AAR response and subsequently impacts immune regulation. Researchers do not yet fully understand the role that amino acid limitation plays in disease response or why restricting proline inhibits Th17 cell production.

Nevertheless, “AAR pathway is clearly an interesting drug target, and halofuginone, in addition to its potential therapeutic uses, is a powerful tool for studying the AAR pathway,” said Whitman.

This research was funded by the National Institutes of Health and a Harvard Technology Accelerator Award.

—Cathryn Delude

Source - Focus - Internet Page

Nature Chemical Biology - Internet Page

http://www.proventus.org.uk/page651.html

The occurrence of Multiple Sclerosis, is significantly on the rise in India

2012-02-20T08:24:00.000-08:00

The occurrence of Multiple Sclerosis, is significantly on the rise in India where it is now “largely under-recognised and under-diagnosed”, Dr Richard A Rudick, a renowned neurologist said on Saturday.

While the disease prevalence rate in the US is around one per 1, 000 population, almost as many people in India “may be affected” by this disease, Dr Rudick, Director of the Mellen Centre for Multiple Sclerosis Treatment and Research, Department of Neurology, Neurological Institute, Cleveland, USA, said here.

Delivering the prestigious T S Srinivasan Endowment Oration, which brings to India world leaders in the field of neurology every year, he said such a prevalence level “could make its occurrence rate in India exponentially much higher than that of the US.” Stating that the disease, which is on the rise all over the world, was a prototype “auto-immune disease” that affects the brain and the spinal cord, he added that its most recognisable symptoms include--visual loss that can last for days or weeks, inflammation of the spinal cord that can manifest as numbness from the legs right up to the hip region, difficulty in walking and loss of balance while doing so.

No longer untreatable?

However, neurologists across the world in the last 15 years have made dramatic progress in treating the disease than in the last 200 years, Dr Rudick said. “The good news is that it is no longer untreatable. “With today’s medical advances, we can completely control the disease in about 30-50 per cent of the patients,” emphasised the neurological expert who has played a key role in several clinical trials and in developing new imaging measures for it.

Even as there was growing awareness about this disease across the world, he said it affect women more than men, particularly in the age group of 15-50 years. People in the northern latitudes who lived farther away from the equator were more prone to get this disease.

Comment

Recognised hot spots of MS have been established in Bombay and Poona for some while and gathering statistical evidence as to the prevalence of MS worldwide has always been weak. Does this undermine the long held view that people who live further away from the equator were more prone to get MS? Perhaps better diagnosis and improved reporting methodology is uncovering what has always existed? Isn’t the prevalence rate in the US approx. 1:700 not 1:1000 as quoted by Dr Rudick?

http://www.proventus.org.uk/page500.html

Visual Pathway Axonal Loss in Benign Multiple Sclerosis: A Longitudinal Study.

2012-02-17T04:09:00.000-08:00

Benign MS - A type of relapsing-remitting multiple sclerosis in which few relapses occur. The relapses tend to produce sensory symptoms, which go away and leave very little, or no residual damage or disability.

However, people with “Benign MS” have RNFL axonal loss that is as marked as that of typical MS and have reduced vision and quality of life. While overall neurologic impairment is mild, visual dysfunction, not well captured by the EDSS, accounts for a substantial degree of disability in benign MS.

Benign multiple sclerosis is traditionally defined as Expanded Disability Status Scale (EDSS) score ≤3 and ≥15-year disease duration, and is thought to follow a milder clinical course

It describes the problem in those who have had MS for fifteen or more years without picking up any enduring disability, with negligible neurological symptoms and no serious or continuing disabilities.

Usually those classified with Benign MS have mild, infrequent, sensory exacerbations with a full recovery.

Benign MS may only be positively identified after there is minimal disability 10 to 15 years following its official onset.

Some classified with Benign MS will eventually experience disease progression; their course of disease may change and evolve into the progressive stage of MS.

Benign multiple sclerosis is one of the least common forms of the disease.http://www.proventus.org.uk/page647.html

Protecting people during Clinical Translation Process

2012-02-16T08:04:00.000-08:00

The medical community has established a number of checks to protect the rights of people during the process of developing new therapies through clinical trials and innovative medicine / single case studies.

Important elements that are fundamental to this process are:

- The monitoring of experimental treatments for patient safety and ethical practice

- The oversight by a regulatory agency

- Monitoring of experimental treatments for patient safety & ethical practice

Clinical trials are conducted before a treatment becomes available to the general public. Before a trial begins, it should first be carefully reviewed by a group of those, who together have broad expertise and experience in research, medicine and ethics. These groups, often called Institutional Review Boards (IRBs) or medical ethics review committees, evaluate a number of factors including the potential risks weighed against the potential benefit.

Clinical trials should be conducted in a setting that provides appropriate medical care.

Participating people should be made fully aware of the medical procedures they are undergoing and the potential risks and provide their consent.

The progress of the people in the trial should be continuously monitored by medical practitioners who are both knowledgeable in the field and who have the authority to stop the trial for the benefit of the people.

Treatment should be reviewed by a medical ethics committee to make sure that the patient is being treated in an ethical manner.

Overview by Regulatory Agencies

Drug regulatory agencies monitor the development of new treatments. The nature and methods of regulatory agencies and their responsibilities vary from country to country. They adopt a code of conduct or guidelines for researchers and health professionals to follow to promote safe and effective medical practice. These agencies judge the scientific principles, the level of danger to the patient, and potential benefits of the proposed therapy at several stages in the clinical translation process.

However, many clinical trials appear to be undertaken without following due procedures and amongst unknowing people, such as.

Drug trials should follow procedures: Azad

Monday, February 6, 2012

Bangalore: The union health minister Ghulam Nabi Azad said on Monday drug trials should be as per laid down procedures.

"Clinical trials have to be there, but going for a clinical trial for testing any medicine on human being, there is a laid down procedure," Azad said, reacting to the apex court's notice to the central government on a plea seeking investigation into illegal and unethical clinical trials.

"…Sometimes the companies don't go by the laid down procedures and it causes great harm to persons and individuals on which this test is carried out," the health minister said on the sidelines of a conference in Bangalore.

"Supreme Court might have said that if any test has to be carried out, it has to be carried out based on procedures."

A Supreme Court bench of Justice R M Lodha issued notice on a plea by Madhya Pradesh-based Swasthya Adhikar Manch that, in a large number of cases, multinational corporations were using contract research organisations for carrying out clinical trials of their drugs, which are not even approved.

Counsel Sanjay Parikh, appearing for the petitioner NGO, told the court that, as a consequence of these illegal clinical trials, a total of 1,727 patients have died in four years from 2007 to 2010.

So what is going on? We are constantly being told that clinical trials are the gold standard. Are they? This may depend on who is doing the saying and who is doing the asking.

Where Have We Been?

2012-02-09T01:25:00.000-08:00

You will have noticed that at Proventus we have not been very active these past weeks. Why? We had to completely rebuild our web site from scratch and put in place other security measures after a failure in our systems of an unknown origin. We also uncovered some hacking attempts.

Fortunately we have overcome these problems and are now back to reality and hope that our fans and followers are still with us.

Proventus is a volunteer run, not for profit charity group. Although based in the UK it is for all to share.

Proventus does not sell any products nor does it advertise any products. Any reference we make about a therapy, medication or any other product is wholly based on our personal experience, or our member’s experience of use as well as insight from our followers.

Our intention is to bring together sufferers of autoimmune, neurological and inflammatory diseases and conditions, wherever they live, to create a pool of knowledge, experience and opinions that is made freely available for all to share.

Over time, together as a community, we can build useful pages of information online that will provide a voice for the many sufferers who are the silent majority, and enable us to face up to, challenge and question the system whenever it is required.

Thank you from all of us at Proventus

Inflammation

2011-12-08T01:58:00.000-08:00

Uncovering whether or not you are suffering from unseen inflammation in your body is quite important because it is an underlying factor associated with many diseases. Disease processes can be affected or caused by inflammation.

If your immune system’s ability to quell inflammation is impaired you may be heading toward illness and premature aging.

Addressing the cause [s] of inflammation and learning how to live an anti-inflammatory lifestyle can assist in supporting your health.

There are normal and appropriate inflammatory responses of the immune -defence system -- to infection and trauma. This kind of inflammation is necessary. It is needed it to survive and works to determine friend from foe.

An immediate inflammatory reaction generated by your body’s immune system is known as an “acute inflammatory reaction”

When your immune system becomes uncontrolled, for whatever reason, it will attack the bodies healthy tissues resulting in autoimmune diseases and chronic, underlying inflammation which can slowly damages your organs / tissues reducing your ability to function optimally.

It is postulated that chronic inflammation will also lead to premature aging.

Anti-inflammatory drugs are often useful for acute problems, however they do interfere with the body's own immune response and cause adverse side effects especially with long term use.

Illness - ill-health - ailments

A state of poor health is sometimes thought to be another word for disease. However illness may be considered to the subjective perception of a person’s experience [s] of the symptoms of an objectively defined disease or condition.

The state of being healthy includes not merely the absence of disease and feeling ill, it may be considered to be a state of complete physical, mental and social well-being. When these conditions are not fulfilled, then the person can be considered to be experiencing an illness or to be ill.

Signs and symptoms

A symptom or symptoms of a condition is that which the person experiences it is how they feel.

A sign or signs of a condition is that which is observed and noted by the health professional [s] which provides indications of the condition [s] and enables them to diagnose the problem and prescribe the appropriate medication [s].

Taking preventative action to assist in the health process is not the same as taking action to combat a serious disease. If you are unfortunate enough to experience unusual symptoms, no matter how vague, you must must consult a health professional. If you are unfortunate enough to meet with an unsympathetic health professional then consult another.

Never delay early diagnosis and early intervention is imperative.

Taking action to counter inflammation will help you to establish a better level of health and by so doing assist your body in combating any disease problems.

Remember in the case of serious diseases it is never a cure.

Whole Foods - Eat high-fibre, plant-based diets, which are inherently anti-inflammatory.

Healthy Fats - Eat healthy monounsaturated fats in olive oil, nuts and avocados, and getting omega-3 fats from small fish like sardines, herring, and wild salmon.

Regular Exercise - Regular exercise reduces inflammation. It also improves immune function, strengthens your cardiovascular systems, corrects and prevents insulin resistance. It is key for improving your mood and erasing the effects of stress. When exercising play music that you enjoy.

Relax - Your whole body and lower inflammation when you practice yoga or meditation, breathe well, take a hot bath.

Heal Your Gut -- Take biotic to help your digestion and improve the balance of healthy bacteria in your gut, which reduces inflammation.

Supplement -- Take a multivitamin/multi-mineral supplement, fish oil, and vitamin D, may help reduce inflammation.

Avoid Allergens -- If you have food allergies, find out what you're allergic to.

Anti-inflammatory refers to the property of a substance or treatment that reduces inflammation.

Some advocate the consumption of anti-inflammatory foodstuffs as a means of influencing inflammation. A typical anti-inflammatory diet includes a well-balanced, varied diet high in vegetables and low in refined carbohydrates and fats.

Anti-inflammatory foods include most colourful fruits and vegetables, oily fish, nuts, seeds, and certain spices and herbs.

A diet high in vegetables and low in refined carbohydrates and saturated and trans fats may enhance the creation of prostaglandins.

There are three main types of prostaglandins: PG-E1 and PG-E3, which have anti-inflammatory properties, and PG-E2, which promotes inflammation.

Omega-3 fatty acids have been shown to disrupt inflammation cell signalling pathways by binding to the GPR120 receptor.

http://www.proventus.org.uk/page774.html

http://www.proventus.org.uk/page1174.html

Ketamine

2011-11-24T03:54:00.000-08:00

Ketamine has a wide range of effects in humans, such as; analgesia, anaesthesia, hallucinations, elevated blood pressure, and bronchodilation.

Ketamine is primarily used medically for the induction and maintenance of general anaesthesia, usually in combination with a sedative. Other uses include sedation in intensive care, analgesia (particularly in emergency medicine), and treatment of bronchospasm. It has been shown to be effective in treating depression in patients with bipolar disorder who have not responded to other anti-depressants.

In persons with major depressive disorder it produces a rapid antidepressant effect, acting within two hours as opposed to the several weeks taken by typical antidepressants to work.

There is some evidence that chronic use of the drug is linked with severe bladder problems. The drug has been used medically for decades and has slowly risen in popularity as a recreational stimulant.

Frequent use of ketamine has revealed it may be linked to Incontinence, Bladder shrinkage and damage to the Kidneys and Ureter leading to extreme pain.

The drug has shown some promise as a treatment for depression and that mouse models of depression ketamine promoted the rapid synthesis of a protein known to have antidepressant effects. This may lead to ketamine becoming the basis for a new generation of drugs.

Some people with diseases problems such as multiple sclerosis experience bladder problems as well as experiencing depression; therefore attention must be paid when developing a drug such as ketamine that its possible use to treat depression may exacerbate the bladder problems a multiple sclerosis sufferer may have.

Peck TE, Hill SA, Williams M (2008). Pharmacology for anaesthesia and intensive care (3rd edition). Cambridge: Cambridge university press. p. 111.

Nancy Diazgranados et al (August 2010). "A Randomized Add-on Trial of an N-methyl-d-aspartate Antagonist in Treatment-Resistant Bipolar Depression". Archives of General Psychiatry 67 (8): 793–802. doi:10.1001/archgenpsychiatry.2010.90.

BJU International DOI: 10,1111/j.1464-410X.2010.

Zoonosis

2011-11-23T06:37:00.000-08:00

Any infectious disease that can be transmitted (in some instances, by a vector) from non-human animals to humans or from humans to non-human animals (the latter is sometimes called reverse zoonosis) In a study of 1415 pathogens known to affect humans, 61% were zoonotic. The emergence of a pathogen into a new host species is called disease invasion.

Infectious disease surrounds us – It is one of the basic processes of ecology alongside others such as predation, competition and photosynthesis. Throughout history predators are usually big beasts that eat their prey from the outside in, disease causing agents (pathogens) are small beasts that eat their prey from within.

Accidents happen, aberrations occur, opportunities and circumstances change and when a pathogen leaps from a non-human animal into a person and by so doing causes a disease problem the result is known as “zoonosis”.

Interspecies pathogen leap is a common occurrence, more than 50% of human infectious diseases are shared between non-human animals and people; diseases such as:

Bovine tuberculosis.

Bubonic plague.

Ebola.

Hendra.

Lyme Disease.

Marburg.

Monkey Pox.

Nipah.

Rabies.

West Nile Fever.

Yellow fever.

Close contact between two species presents an opportunity for a pathogen to move from one species to another, broadening its horizons by expanding its ability to spread from its original reservoir host into a new species and by so doing increasing its abundance and geographic reach.

Close contact between non-human animals and humans occurs in differing ways, animal husbandry, domestic pets (exotic type), consumption of wild animals, and closer contact with wild life by disruptive penetration of humans into the wild landscape.

Speed of travel and its availability as well as the large numbers of humans existing on this crowded planet we live on are contributing factors once a pathogen crosses over from non-human animals to humans.

Infectious disease is caused by parasites (pathogens) capable of damaging their host. These include some, but not all, members of the viruses, bacteria, fungi, protozoa, worms, and prions.

Infections are held in check, where possible, by the immune system, operating at several levels, depending on the evasion strategies adopted by the pathogen.

Aimspro as a Mono-therapy in Scleroderma.

2011-10-13T02:11:00.000-07:00

Scleroderma, a chronic disease of the rheumatology family, that is characterised by fibrosis (or hardening), vascular alterations, and auto-antibodies.

The cause of scleroderma is unknown and those with this condition experience a build-up of a substance called collagen in their skin and other organs. This build-up leads to the symptoms of the disease.

This affects the small blood vessels (arterioles) in all organs. First, the endothelial cells of the arteriole die off, along with smooth muscle cells, by a process of apoptosis (the process of programmed cell death). They are replaced by collagen and other fibrous material. The disease usually affects people 30 to 50 years old and women get scleroderma more often than men. (4:1). Widespread scleroderma can occur with other autoimmune diseases such as lupus. The diffuse form of the disease is rapidly progressing and affects a large area of the skin and one or more internal organs, frequently the kidneys, esophagus, heart and lungs. This form of scleroderma can be quite disabling.

Scleroderma symptoms vary, depending on which organ systems are involved. Diagnosis can be difficult as some of the early symptoms are common in the general population and are not always associated with scleroderma.

There is no direct cure for scleroderma. As the exact cause is unknown, any treatment is patient-specific and aimed at ameliorating symptoms of the disease.

Slowly a person’s body organs stiffen and lose their flexability. This process results in an excessive production of a protein called collagen and a hardening of tissues, which can seriously affect many of the body systems.

Significantly, at the end of a 26 week study period “aimspro” proved it was a safe and well-tolerated medication when administered to these especially sick patients at such a late-stage of the disease. There was no deterioration in haematological, biochemical, immunologic, cardiologic or in pulmonary parameters that were measured. In addition to the positive safety result, there were encouraging signals of clinical benefit in the secondary outcome measures.

http://www.proventus.org.uk/page1078.html

CCSVI - Latest Research News

2011-08-25T08:39:00.000-07:00

If CCSVI is not associated with MS or is not considered to be a causative agent of MS it is reasonable to consider that it is a stand-alone disorder that would affect an MS sufferer’s health and perhaps exacerbate their symptoms. Therefore as with other stand-alone disorders such as; Candida, Coeliac, Leaky Gut, Anaemia; which an MS person may experience and which may exacerbate their symptoms it would be reasonable to suggest that all MS sufferers are investigated and as with other underlying disorders, if CCSVI is uncovered the person should be offered the liberation treatment in an attempt to alleviate their suffering. Neurologists are willing to prescribe disease modifying drugs which have severe adverse side effects, therefore why should the Liberation procedure be viewed differently?

Progressive multiple sclerosis is not associated with chronic cerebrospinal venous insufficiency.

Baracchini C, Perini P, Causin F, Calabrese M, Rinaldi F, Gallo P.

Source - From the First Neurology Clinic (C.B., P.P., M.C., F.R., P.G.), Multiple Sclerosis Centre of The Veneto Region (P.P., M.C., F.R., P.G.), and Neuroradiology Unit (F.C.), Department of Neurosciences, University Hospital, Padova, Italy.

Abstract

OBJECTIVE:

Chronic cerebrospinal venous insufficiency (CCSVI) had been suggested to play a major pathogenetic role in multiple sclerosis (MS), but recent data on early stages of MS have not confirmed this theory. Nonetheless, CCSVI could represent a late phenomenon of MS or be associated with progression of disability. Thus, we studied CCSVI prevalence in primary progressive (PP) and secondary progressive (SP) MS, to clarify whether CCSVI characterizes the progressive forms of this disease.

METHODS:

A total of 35 patients with SPMS, 25 patients with PPMS, and 60 age- and gender-matched normal controls (NC) were enrolled into a cross-sectional study. Extracranial and transcranial high-resolution venous echo color Doppler sonography (ECDS-TCDS) was performed in all patients and NC. Those patients having any abnormal ultrasound finding were asked to undergo selective venography (VGF).

RESULTS:

Patients with PPMS (11 women, 14 men; mean age 47 ± 11 years) had a disease duration of 11 ± 7 years and Expanded Disability Status Scale (EDSS) score of 6.0 ± 0.5. Patients with SPMS (22 women, 13 men; mean age 45 ± 14.5 years) had a disease duration of 18 ± 14 years and EDSS score of 6.0 ± 0.8. TCDS was normal in all patients. ECDS showed one or more abnormal findings in 9/60 (15.0%) patients (7/35 [20.0%] SPMS, 2/25 [8.0%] PPMS) and in 14/60 (23.3%) NC (p not significant for all comparisons). CCSVI criteria were fulfilled in 0 NC and 4 (6.7%) patients with MS: 3 SPMS and 1 PPMS. VGF, performed in 6/9 patients, was abnormal only in one case who had bilateral internal jugular vein stenosis.

CONCLUSION:

Our findings indicate that CCSVI is not a late secondary phenomenon of MS and is not associated with disability.

Breastfeeding & Reynauds

2011-08-18T07:43:00.000-07:00

Raynaud’s phenomenon can cause nipple pain in breastfeeding mothers – but a small case series found that it is almost always misdiagnosed.

Of 86 women in the series – the largest ever accrued – 24 patients had Raynaud’s, all of whom were misdiagnosed as having fungal mastitis, Dr. Honor Fullerton Stone and her colleagues reported in a poster presented at the American Academy of Dermatology’s Summer Academy Meeting.

Although the physical exam can be complicated by other factors – a flare of atopic dermatitis or a fungal or bacterial superinfection – Raynaud’s should always be considered in the differential diagnosis of lactating women with nipple pain, according to Dr. Fullerton Stone of Stanford (Calif.) University.

She presented a chart review of 86 lactating women complaining of nipple pain; the cases were accrued from 2004 to 2010 in a single medical center. Of these, 24 (28%) were diagnosed with Raynaud’s, based on the presence of at least two of the following diagnostic characteristics:

– Color changes of the nipple (blue, white, or red), especially with exposure to cold.

– Cold sensitivity or color changes of acral surfaces with cold exposure.

– Chronic deep breast pain for 4 weeks or longer and failed therapy with oral antifungals and/or antibiotics.

All 24 women with Raynaud’s presented with enlarged breasts, mild to moderate erythema of the areola, and desquamation of one or both nipples. Two also had plugged milk ducts.

All were initially diagnosed as having a candida breast infection. Ten of them reported that their babies had experienced an episode of oral thrush. And 20 of the 24 (83%) had been unsuccessfully treated with topical or oral antifungals, including at least one course of fluconazole (18; 75%).

Two also had a skin superinfection, growing Staphylococcus aureuson a bacterial culture; these women also received a course of oral antibiotics.

After being diagnosed with Raynaud’s, about 16 (67%) received a course of nifedipine; 3 discontinued the drug because of headache, dizziness, or nausea. Of the 13 who continued the drug, 10 (77%) reported a decrease or elimination of their nipple pain.

Other Raynaud’s-specific treatment included advice to wear warm clothing, to take hot showers before nursing, and to avoid caffeine and other vasoconstrictive drugs that could precipitate symptoms.

In addition to the Raynaud’s-specific treatment, all of the women were treated for accompanying issues, including breast dermatitis and antifungal therapy.

All received a prescription for a low- or moderate-strength hydrocortisone butyrate cream or alclometasone dipropionate to be applied twice a day for 2 weeks. They were also told to apply Aquaphor two or three times daily, over the steroid cream. Most (23) also had an additional standard course of oral fluconazole (400 mg on day 1 followed by 200 mg daily for the next 8-10 days).

Twenty women participated in a follow-up survey. Most (15, 75%) also reported that they had cold sensitivity or color changes in their hands and feet. Two reported having been diagnosed with an autoimmune disease – either lupus or Sjögren’s syndrome, and two reported having had a breast cyst removed.

Aimspro has completed the treatment period of it's Phase II study in MS and Scleroderma

2011-08-13T11:17:00.000-07:00

Daval International announced the completion of the treatment period of its randomised, placebo-controlled, double blind Phase II Study, Treating Patients with Bladder Dysfunction with Aimspro in Secondary Progressive Multiple Sclerosis (SPMS). Standard clinical measures and assessment scores recorded on patients who have MS, as well as novel biomarkers will be used to investigate safety, efficacy and response to treatment.

Daval expects to have the initial results from this trial by the end of the summer of 2011, with secondary and tertiary outcomes (biomarker data) being made available shortly thereafter. The study completion marks more than 10 years of research and development undertaken by Daval with Aimspro.

"Daval is extremely delighted to have completed this very complicated study, which is breaking new boundaries in the quest to find a cure for Secondary Progressive Multiple Sclerosis. This study was an important step towards further understanding how much Aimspro could really help people with this disease, for which there is currently no cure or therapy and the results are eagerly awaited" said Professor Syed Haq, MBBS, BSc, PhD, DIC, MCRP(UK) - Chief Scientific Officer at Daval International - webpage.

The Study

20 patients participated in this randomised, placebo-controlled, double blind, crossover Phase II trial comparing Aimspro with a placebo. Subjects in both the placebo and treatment groups of the trial were given the treatment by subcutaneous injection twice weekly for 4 weeks. After a 6 week wash-out period they crossed over to receive 4 weeks of Aimspro or placebo. The primary endpoint of the study is the change in average voided volume at weeks 0 to 4 and weeks 10 to 14 respectively. The secondary endpoints of the study are to assess the efficacy of Aimspro as a therapeutic agent for SPMS noting the change in average 24-hour frequency; change in visual acuity and colour vision; change in I-QOL score; change in Kurtzke EDZ assessment; change in MS Impact Scale; change in MS Functional Composite and the change in the MS Walking Scale. http://www.proventus.org.uk/page1030.html

AIMSPRO is a pharmaceutically derived biological product that is manufactured and processed using a unique specification that is patent protected. It has passed all of the relevant regulatory authorities and industry standards and is derived from a caprine hyperimmune source"

Aimspro is composed of a set of peptides that act to stimulate the release and regulation of a molecular cascade that modulates the Hypothalamo-Pituitary-Adrenal (HPA) axis. The medication demonstrates powerful anti-inflammatory properties. It contains cytokines that induce a predominantly TH-2 anti-inflammatory profile in the patient.

Some of the peptides in Aimspro are regulated and bound by specific carrier molecules that may regulate the action and release of their ligand (a signal triggering molecule, binding to a site on a target protein). They are probably necessary for the appropriate regulation and pharmacokinetics of the molecular machinery. The carrier molecules also function as a slow release mechanism, releasing bioactive components over several days.

http://www.proventus.org.uk/page11.html

Multiple Sclerosis Case Studies & Single Case Studies - http://proventus.org.uk/page889.html

The MS Society (UK) had posted up on their web site a Fact v Fiction document some of which provided misleading information about Aimspro. Since then the posting has been taken down – http://www.proventus.org.uk/page744.html 

SEC sues biotech over alleged fraud

2011-08-05T09:27:00.000-07:00

Proventus works to make awareness of new and novel treatments and attempts to present the information in such a manner that sufferers are able to make their own decisions and not be swayed by third parties. Proventus warned people about stem cell therapy clinics several years ago and was ignored. We have been making awareness of SF1019 for some years despite several attempts to silence us.

The Securities and Exchange Commission sued Immunosyn Corp. , three shareholder companies and four senior executives for allegedly misleading investors about the regulatory status of the company's sole product. Three executives were charged with insider trading. The SEC alleges that Immunosyn misleadingly stated in various public filings from 2006 to 2010 that its controlling shareholder - Argyll Biotechnologies LLC - either planned to commence or had commenced the U.S. regulatory approval process for human clinical trials for SF-1019, a drug derived from goat blood that was intended to treat a variety of ailments. The public filings failed to disclose that the U.S. Food and Drug Administration had already twice issued clinical holds on drug applications for SF-1019, prohibiting clinical trials from occurring, the SEC charged. The agency also said the company said a regulatory approval process in Europe was underway or imminent when no application was submitted.

Source - Market Watch - http://www.marketwatch.com/story/sec-sues-biotech-over-alleged-fraud-2011-08-02?siteid=yhoof2

The MS Society (UK) had stated on their web site, that there is anecdotal evidence for this drug, however without explanation they deleted the pages. There did not appear to be any indication of where the MS Society obtained or researched their data. Source - Copy on file.

The wheels of authority work slowly while the sufferer suffers

Breathing Well

2011-07-15T01:16:00.000-07:00

A fit and healthy person breathes about 18 times per minute, 1.080 times per hour and 25,920 times every 24 hours. People do not give the breathing process a second thought and are not aware of how vital its role is. Breathing well provides many health benefits and is as important, if not more important than exercise and diet which are all essential for optimum health.

Breathing well confers many health benefits from calming stress, boosting energy and vitality, making the transfer of gases more efficient (taking in oxygen and expelling carbon dioxide)), assisting in providing quality sleep. Many people for different reasons develop a shallow breathing habit such as bad posture, a sedentary lifestyle, mobility problems, breathing without conscious thought. Shallow breathing creates the situation whereby you don’t take in sufficient oxygen or expel carbon dioxide efficiently.

Breaking bad breathing habits and learning good breathing habits takes time, it requires conscious thought and the realsiation that the effort is as important as having a good dietary and exercise regime.

Simple – Breathe in slowly through the nose and exhale slowly through the mouth as you do so mentally count up to four as you breath in and count down to four as you breathe out.

Posture is important – shoulders back, straighten the spine allowing it to take up a healthy ‘S’ shape and visulise open, wide and slow deep breathing. You will not fill and exercise your lungs by breathing into the upper part only and the mistake some make is judging deep breathing by the rise and fall of their chest area. As you breathe in and out rest your hands on your stomach it is the rise and fall of this area that indicates that the lungs are being filled to capacity not the expansion of the chest area alone.

Many people with autoimmune disease like multiple sclerosis live their lives alone with little or no social contact except for the attending carer’s and occasional brief visit from a health professional, doctor, nurse, social worker. Without support they have little or no opportunity to follow any regime that would enhance their quality of life. Unfortunately many sufferers deteriorate not because of the course of their disease but because of muscle atrophy and lack of stimulation.

People who experience mobility problems may say “How am I going to achieve this”? The answer is “with difficulty”. Many of them are confined to a chair or wheelchair during their waking hours and it is easy to become slumped over without realising it and others will have limb movement problems. There is no easy answer. Taking the opportunity to exercise the lungs while lying flat on your bed will assist some of you. Before sleep and after waking would provide the opportunity. Remember any exercise is better than no exercise.

Whole GM BT Toxins Found in Human & Foetal Blood

2011-06-24T10:08:00.000-07:00

New research from Canada has found a Bt toxin produced by GM insect resistant crops in the blood of women and evidence that it was passed to foetuses.

Bt toxin as detected by the researchers is present in Mon 810 maize, which has EU cultivation approval but is currently banned in France, Germany, Austria, Hungary, Luxemburg and Greece. Twenty-four types of GM maize and cotton containing Bt GM traits have been granted approval for importing into the EU and one can be grown (Mon810 maize).

Regulators advise that no GM protein survives intact in the intestinal tract to enter the blood stream, so the detection of intact Cry1Ab toxin in human blood is of great significance.

Pesticides used on GM herbicide tolerant (HT) crops were also detected.

This study was carried out by a team at Sherbrooke University Hospital in Quebec and has been accepted for publication in the peer reviewed journal Reproductive Toxicology.

The team took blood samples from 30 pregnant women prior to delivery, 30 samples from umbilical cords immediately after birth and samples from 39 non-pregnant women who were undergoing treatment. All the women were of a similar age and body mass index, and none worked with pesticides or lived with anyone who did.

The results show that the toxic Bt protein Cry1Ab was present in blood serum from all three sources (93% of pregnant women, 80% in umbilical blood and 67% of non-pregnant women). The researchers suggest that the most probable source of the toxin is GM food consumed as part of a normal diet in Canada, where GM presence in food is unlabelled. The Canadian scientists have not speculated on any health effects from the presence of Cry1Ab protein as this was beyond the scope of their study.

The findings add to concerns about the toxicity and potential allergenicty (having the capacity to induce allergy) of Bt proteins expressed by many scientists.

The researchers also looked for, and found, two herbicides used on GM herbicide tolerant crops in blood samples. Glyphosate is used on Monsanto Roundup Ready (RR) crops and Glufosinate on Bayer’s Liberty Link (LL) crops. Both were found in the non-pregnant women, as was glufosinate’s metabolite 3-MMPA.

Safety concerns about both products have been growing since the introduction of GM herbicide tolerant crops, including links to Parkinson’s disease and cancer in the case of glyphosate.

Proventus does not hold a view about GM foodstuffs. However, given that more women than men suffer from autoimmune disease and a substantial number of these women are between 17 and 35 years, their child bearing years, a degree of concern must be raised as to the possible long term effect on a child who may already have a propensity to inherit their parent / parent’s diseases.

An autoimmune disease such as multiple sclerosis. Genetic factors clearly influence the risk of developing MS, as MS can “run” in families. Genetics & Pediatric Multiple Sclerosis - website page

You will recall that we asked you to write to MPs and MEPs demanding Government action on the new Canadian study finding whole GM Bt toxnis in human and foetal blood - a finding that contradicts EFSA and FSA advice saying this can't happen.

GM Freeze has written to all major UK supermarkets informing them of this new study and that we have written to the UK Government demanding action. We also asked them to take action on a number of points.

It would be very valuable for you to write to supermarkets now as customers repeating those demands. (Full details and background available at the link.) - write to your supermarkets

Government Backs High Security GM Test Sites

The Coalition Government has today put its support behind conducting GM field trials on high security sites.

In their response to a House of Commons Science and Technology Committee Report [1], the Government rejected the proposal to keep the location of GM sites secret but stated, “Government is ready to facilitate the hosting of any trials at suitable sites that could provide greater security than might otherwise be the case.” Full report - GM Freeze - webpage

Source

GM Freeze - webpage

GM Watch - webpage

Ref

Aziz A. and Leblanc S., 2010, Reproductive Toxicology, accepted 13 February 2011 Currently available online or from GM Freeze.

GM Freeze media briefing

Seralini G-E., Mesnage R. Clair E., Greese S., Spiroux de Vendômois J.ann Cellier D., 2010. Environmental Sciences Europe 2011, 23:10

FSA gmfoods
GMO Compass

Benachour N and Séralini G-E, 2009. Glyphosate Formulations Induce Apoptosis and Necrosis in Human Umbilical, Embryonic, and Placental Cells, Chemical Research in Toxicology Vol22 No1 pp 97-105

Garden Railway Day

2011-06-21T02:43:00.000-07:00

Would like to say a HUGE thankyou to Susan & David Fleetwood who opened their lovely garden railway to raise money for Proventus. Taking into consideration this was a private event held for friends, Susan & David raised a massive £137!!!

Nexvax2 - A Potential New Vaccine for Coeliac Disease?

2011-06-20T03:42:00.000-07:00

A potential vaccine for coeliac disease has shown promising results for treating coeliac disease in a Phase I clinical trial and is expected to move to Phase II trials within the next year. The Phase I trial undertaken in Melbourne, Australia, evaluated the safety, tolerability and bioactivity of the vaccine Nexvax2, which has been developed for coeliac disease.

A Phase I trial undertaken in Melbourne, Australia, evaluated the safety, tolerability and bioactivity of the vaccine Nexvax2, which has been developed for coeliac disease. Coeliac disease is an autoimmune disease caused by an immune reaction to the gluten protein found in wheat, rye and barley.

The three peptides on which the vaccine is based were identified by Dr Bob Anderson from the Walter and Eliza Hall Institute’s Immunology division. The vaccine is being further developed by US biotechnology company ImmusanT, of which Dr Anderson is Chief Scientific and Medical Officer.

Dr Anderson presented the Phase I trial results on Sunday at the Digestive Disease Week symposium in Chicago, Illinois, US.

“Nexvax2 aims to desensitise patients to the three specific peptides in gluten that we have previously identified as ‘toxic’ to people with coeliac disease,” Dr Anderson said. “Our Phase I study showed that Nexvax2 was safe to use and well tolerated, and importantly, that it had the desired biological response in patients with coeliac disease.”

Dr Anderson said the vaccine would be suitable for treating the approximately 90 per cent of coeliac disease patients with the DQ2 genetic form of disease.

The Phase I study evaluated the effect of weekly injections of Nexvax2 over three weeks in coeliac patients on a strict gluten-free diet.

At the highest doses, some patients had gastrointestinal symptoms similar to what they’d experience after eating gluten products. This suggests the vaccine uses the correct peptides for eventually being able to tolerate gluten.

Dr Anderson said the peptides used as part of the vaccine could also be used to improve diagnostic testing of coeliac disease.

Source - Walter + Eliza Hall Institute - webpage.

Human Skin Cells converted directly into functioning brain cells

2011-06-10T04:22:00.000-07:00

American scientists have used genetically modified viruses which had the effect of causing a small portion of skin cells to behave like neurons. The method, unlike other approaches, did not involve reprogramming the skin cells into stem cells but is a direct transformation of the skin cells into neurons.

A Californian team say they have managed to convert human skin cells directly into functioning brain cells. The scientists manipulated the process by which DNA is transcribed within foetal skin cells to create cells which behaved like neurons.

The technique had previously been demonstrated in mice, says the report in Nature. It could be used for neurological research, and might conceivably be used to create brain cells for transplant.
Reprogrammed skin:
The scientists used genetically modified viruses to introduce four different "transcription factors" into foetal skin cells. These transcription factors play a role in the "reading" of DNA and the encoding of proteins within the cell.

Marius Wernig, an assistant professor of pathology at Stanford University School of Medicine in California, was one of the researchers. He believes the immediate application will be in modelling diseases, whereby skin cells from a patient with a known neurological condition could be used to produce new brain cells for research. The technique might one day also be used to create new brain cells which could be transplanted into patients with neurological disorders, he said.

Note - We asked Marius Wernig if he and his team consider that this work has the potential to repair the damage caused by a disease such as multiple sclerosis? “Not directly - but similar approaches perhaps” he said.

Supplementary Information - natures journal - webpage pdf file

Drug regulator accused of harming patients with secrecy

2011-06-09T04:16:00.000-07:00

Drug regulator accused of harming patients with secrecy. Scientists say data must be released to allow the true benefits and harms of drugs to be independently assessed.

The body that licenses medicines in the UK and Europe is today accused of putting commercial interests ahead of the safety of patients after two scientists battled for three years to get access to unpublished trial data. The European Medicines Agency (EMA), which is responsible for the safety and efficacy of medicines licensed in Europe, only released the trial findings, running to almost 130,000 pages, in February after the European ombudsman ruled that it was guilty of maladministration.

The scientists, from the Nordic Cochrane Centre in Denmark, say the withholding of unpublished data puts the lives and welfare of patients at risk and full access must be granted to allow the true benefits and harms of drugs to be independently assessed.

Pharmaceutical companies invest millions of pounds in drug research and have a powerful commercial interest in publishing positive findings for the medicines they have spent years developing. This is known as "publication bias" – the selection of only positive studies for publication. Publication bias has been blamed for the debacle over the powerful painkiller Vioxx, which was withdrawn from the market in 2004 over fears that it could cause heart attacks. Professor Peter Gotzsche and Anders Jorgensen from the Danish Cochrane Centre said Vioxx "has probably caused about 100,000 unnecessary heart attacks in the US alone" as a result of selective reporting.

They decided to investigate two obesity drugs, orlistat and sibutramine, and requested the unpublished trial data from the EMA in June 2007. "Anti-obesity pills are controversial," they said. "People have died from cardiac and pulmonary complications or have experienced psychiatric disturbances, including suicidal events."

Sibutramine was withdrawn from the market in January 2010 following evidence that it increased the risk of heart attacks and strokes. Another obesity drug, rimonabant, was also withdrawn. Orlistat is the only one that remains on the market. But the EMA refused access to the data, citing commercial confidentiality. The regulatory body argued that they constantly monitored drugs and updated their assessments.

In June 2010, the European ombudsman, Nikiforos Diamandouros, criticised the EMA's refusal to grant access to the trials and said it was guilty of maladministration. The EMA responded in November, saying it would widen public access to trial reports and other documents. But it did not release the data on the obesity pills to the researchers until 1 February 2011.

Professor Grotzsche said yesterday that they had not yet had time to study the unpublished trials they had received.

Writing in the British Medical Journal, the authors say the case sets a precedent on the transparency of data, and other regulators such as the Food and Drug Administration in the US should follow suit.

The EMA said it had released 129,303 pages of documents to the Cochrane researchers in line with its "access to documents" policy which came into force last November.

Source - The Independent - Jeremy Laurance, Health Editor - webpage

Wednesday, 11 May 2011

A Summary of Events

2011-04-29T09:13:00.000-07:00

The presentation held in Hordle, Hampshire UK was received locally with enthusiasm and we were delighted that a cross section of people with autoimmune disorders attended. The audience represented a wide range of disease problems such as M.S., Lupus, Scleroderma, Eczema, Motor Neuron Disease, Rheumatoid Arthritis, M.E., Inflammation and Fibromyalgia.

The LDN researchtrust charity addressed the audience on the case for Low Dose Naltrexone – a much ignored potential therapy for a broad range of autoimmune diseases.

Frank Ludlow laid before the audience an explanation of his work with Oxythiocyanate and its use combating infectious problems such as MRSA – UTI’s – Nano Bacteria and other infection problems that may be encountered by those who suffer from autoimmune diseases.

Professor Syed Haq MBBS, BSc(HON), PhD, DIC, MRC (UK) gave a detailed explanation of the importance of wellness and the issues of health maintenance that are beneficial for those who suffer from autoimmune diseases, the impact and benefit that careful understanding and use of supplements can provide and an insight into a range of therapies for autoimmune disease.

Jim Leigh laid before the audience the benefits that podiatry may have for people with mobility and pain problems as well as those with muscular and posture problems.

Proventus brought the guest speakers together to cover a range of subjects concerning autoimmune disease sufferers. Speakers from some of the large health charities had been invited to present but chose not to attend.

Overall, went the day well. We look forward to hosting further wellness events across the country and seeing some of you there!

Went the day Well

2011-04-20T04:06:00.000-07:00

Proventus would like to thank the speakers who presented at our autoimmune wellness talks during Wed April 13th at the Hordle W.I. Hall Hampshire.

Mrs S Woolley MBE.

Professor Syed Haq - MBBS, Bsc(HON), PhD, DIC, MRC(UK)

Linda Elsiegood LDN researchtrust

Frank Ludlow Qures Ltd

Jim Leigh - Bsc, Hons Podiatry, Dpodm, Mchs, HPC.

Also in attendance were medical researchers and doctors.

It was a pleasure to meet such a goodly number of people who presented with a varied number of autoimmune disease.

Motor Neurone

Lupus.

Eczema.

Scleroderma.

Fibromyalgia.

Multiple Sclerosis.

For so many to make the effort to attend both the afternoon and evening talks, especially on such a dark and rainy day, was particularly encouraging.

We will be posting a complete write up of the talks and events surrounding them during the oncoming days.

Invited guests are given the opportunity to address the audience openly to ensure that all viewpoints are considered and made known to the public.

Invited guests to who didn’t attend.

The MS Society (local)

The MS Trust

The MSRC

MS Nurses (local)

Neurologists (local)

Candida Can Be Fun

2011-03-31T03:05:00.000-07:00

Here at Proventus, we think it’s great when we see someone doing something not only for themselves but for others too. That’s why we love this new book, written & self published by Rebecca Richardson, who is a Candida sufferer.

"Candida Can Be Fun" is a specially tailored survival guide just for you. This book is a frank and honest acco unt of what it is like to live with Candida from a sufferer's perspective. This unique A4 colour paperback contains 148 pages of helpful information and advice. Written with humour, it tells you how to get started, what to expect from this extremely restricted diet and offer brand products that are safe for "Yeasties" and food intolerants to eat, as well as where to source them. More importantly, it contains 100 fully colour illustrated savoury recipes to keep you well fed, so that you can actually see what you can eat. The meals are simple, nutritious and easy to make. The recipes are free from wheat, dairy, gluten, sugar, fruit, alcohol, yeast, caffeine. nuts and fermented products.

This book concentrates on what you are going through - it will help you prepare your kitchen for your new diet and offer you suggestions on what you can do to make the changes a little easier. We strongly recommend you read the introduction to the book before embarking on the recipes. It is good to understand the whole process, rather than just getting straight on with the meals. It is not just about the food, it is about your body as a whole. You have to approach the ailment holistically: mentally, physically and emotionally.

With the Government’s continuation of the Department of Health’s “Change4Life” programme and it’s campaign to encourage the people of Britain to lead healthier lives, this food plan is suitable for everyone, but especially those with certain diet restrictions and food intolerances. These recipes are ideal for diabetics, coeliacs, and ME sufferers and can also help people who experience migraines, recurrent digestive disorders, thrush/cystitis and a compromised immune system, or can just simply be beneficial for the diet conscious.

To purchase a copy of “Candida Can Be Fun” please visit http://www.candidacanbefun.co.uk. The contents of this book have been approved by Katherine Dempsey ITEC, Dip D-T RGG, AoR, Qualified Nutritionist and Reflexologist.

Proventus at the Theatre

2011-03-18T06:03:00.000-07:00

A party of Ladies from the Hordle Women’s Institute went along to see Simon William’s in Yes Prime Minister at the Mayflower Theatre in Southampton on 17^th March.

Simon is the Chairman of Proventus and expressed his pleasure in meeting up with them after what was an outstanding performance.

The members of the Hordle Women’s Institute have taken a special interest in supporting the work of Proventus especially when they learned that auto-immune diseases such as MS, Lupus, Rheumatoid Arthritis, Scleroderma and others affect far more women than men. It also transpired that every member knew someone or knew of someone who was compromised by such a disease.

There is no good way to give bad news, but there may be better ways?

2011-03-12T05:29:00.000-08:00

When a diagnosis has been finally arrived at the health professional has to confront the person and provide answers. For both, the health professional and the person, it is a very stressful and delicate moment during which the health professional has to impart difficult and upsetting news.

The person may already be in a state of anxiety, aware but unsure that there may be a very serious problem or how serious the problem is that is confronting them. They will already feel trepidation brought on by the various diagnostic tests, consultations and hospital visits they have already undertaken.

Not every person is going to have explained to them the problems that may confront them, however many lifelong diseases / disorders, such as MS, ME, Lupus and the problems they present, the impact it will have on that person’s life may cause them to consider that a death sentence has been pronounced.

Some considerable time can elapse between an initial consultation and when a diagnosis is confirmed. This time lapse will contribute to a person’s fears and may create feelings of frustration and anger, not only within the individual but amongst their family and friends.

Early diagnosis is essential, the longer the wait the greater the danger. A considerable number of GP’s have very little contact with people who are suffering from a serious disease / disorder, therefore their symptoms and what they indicate may not be immediately apparent to them. Early diagnosis could not only prevent significant and lifelong health problems but may prevent some disease / disorders worsening.

Once diagnosed the sufferer needs constructive information on an immediate basis, this will enable them to not only understand the disease, but how to confront it.

It is only natural for anybody to want to be seen as an individual, a normal decent human being, not just a case number. Bad news presented to anybody in a cold factual manner is extremely distressing, crushing a person’s hope. Such manner causes the person to consider that the health professional view them as an item rather than a human being and by so doing doesn’t care (this is not unusual and occurs amongst many people).

People go to a health professional seeking an answer to a health problem, when matters become serious they can become frightened, apprehensive and defensive. Confronted with what may appear to be an attitude of indifference the person can become despondent, depressed, lose hope leading to an attitude of indifference causing them to adopt an attitude of ‘what’s the use’ and becoming less than diligent in taking medication they may need or adopting a healthy lifestyle regime that would benefit them.

Being a good communicator is a skill and some are better at it than others, but it is a skill that can be learnt and may go some way in helping those who have to be told bad news.

All disease / disorders are very difficult to come to terms with and everything that once felt certain in a person’s life suddenly becomes terribly uncertain. Have you had a bad experience at the hands of a health professional? If you have tell us your story.

What's in it for Me?

2011-03-08T06:24:00.000-08:00

A question I get asked many times, and the short answer is nothing! The long answer is as follows but you need to know a little about me first.

Born on the 19th August 1937 in a place called Battersea which is in South London. I can remember seeing bombs coming down and houses and buildings in rubble on the ground but I survived all that. As a boy I started my work career as a butcher for about 9 years then joined the railway for the next 42 years or so.

I reached the position of engineering supervisor and eventually retired. At the age of 66 yrs I was diagnosed as having cancer in my neck and throat and felt the time for me to leave this world had come. Undergoing a long operation for some 7 plus hours, during which time my heart started doing all sorts of funny things. I ended up in intensive care for 2 days and a further 10 days in a hospital ward.

Having recovered from that experience, I considered myself to be very fortunate only to be told 2 years later I had lung cancer, however after 6 months of all sorts of tests they decided it was not lung cancer at all but a fungus growing on my lungs which they treated and eventually cured. Left with emphysema, which causes me a lot of problems, lung wise that is, I sometimes look to the sky and say

‘’if there is a god up there you have looked after me ''.

I am not a religious man and do not go to church, but consider myself a good person who will always give a helping hand. Seeing all the sick unsupported people I felt I could give something back, my way of doing that is to do what I can do, when I can, for Proventus. I am not a rich person but my time and effort were something I could give freely.

So the short answer to;

“What’s in it for me”? “Is the great feeling in my heart when I see many of the sick those being helped! That feeling is something that all the money in the world cannot buy”.

Brian - Kent

Tears and Stars

2011-03-04T03:34:00.000-08:00

I can’t believe what's happening to me.

Sometimes I would like to climb a tree.

Often I watch feet walking down the lane.

Last year I could do the same.

If I was a bird then I could fly.

My Grandmother said.

“You never miss the well till the water runs dry”!

Why did health professionals not want to know?

When the ice attacking my limbs did flow.

Why did the expert send for a scan?

When they was no helpful plan.

Only. “It’s MS no cure, no pills.

With them, the health professionals, there were no frills.

Hallo, here comes a smiling face.

A rare pearl in a human face.

It’s my wonderful MS nurse.

Perhaps she has a spell in her purse.

“I’m sending you to the neuro gym.

One day you might even swim”

It’s time to redirect the brain.

Send warmth rushing through many a frozen vein.

It’s time to awaken sleeping toes.

Unfolding like a budding rose.

No longer bound by captive rope.

My joyous heart filled with hope.

Jo Gander - Hampshire UK

A Letter To The Times

2011-03-02T02:10:00.000-08:00

A letter written by a Proventus trustee in response to a report on disability benefit reform.

To : The Editor, The Times.

Dear Sir,

I was dismayed to read the report on ‘benefits reform’ (Sat. Times pp28) and how it is being conducted in the Burnley pilot area. While it is vital to expose the benefit cheats in our society, it is equally vital to show the greatest respect to those suffering from such debilitating and life-shortening diseases as MS.

David Sanderson’s report begs the question as to who these “healthcare professionals” are. Are these examining officers expert enough to understand the full details of how MS affects the human body? There are up to seven types of MS and range from relapsing-remitting to malignant in aspect. Dutch research, about three years ago, confirmed that stress exacerbates MS, often permanently, and the way in which Ann Phillips was treated is nothing short of disgraceful.

Appoint expert medics to the investigating panels and similar judges to hear the appeals or the health problems of genuine sufferers will only be compounded, and creating extra expense over increased care costs in the community.

Yours sincerely,

John Slack, Chair of Trustees for Proventus (a neurological & auto-immune disease charity)

This letter has not been published & we have yet to get a response from the Times.

Caregivers and quality of life in the US

2011-02-28T03:00:00.000-08:00

A recent "study" on quality of life issues for care givers and MS people left me in a state of shock, anger and immense frustration. Was I shocked, angered and frustrated to learn that (and this is a direct quote from the article):

"Conclusion. Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS. "

No. I was shocked, angered and immensely frustrated at the squandering of precious research funds on what I consider to be "junk science". WHY are resources ALLOWED to be diverted from important issues such as the causes and cures of disabling medical conditions in order to "study" what is obvious to the average person with any common sense????

If I hit my thumb with a hammer, IT WILL HURT. I don't need a study to tell me this or to confirm any "anecdotal" evidence of the obvious. STOP THIS NONSENSE! Our precious resources must be used for meaningful science or, at the very least, to provide the very "interventions to reduce caregiver strain and burden in those at risk" recommended by this study.

contributed by K (USA)

Multiple Sclerosis The Hidden Disease

2011-02-23T05:12:00.000-08:00

It seems that those who are affected by Multiple Sclerosis might as well be invisible when one considers how little is done for them and how little progress has been made over the last twenty to thirty years, to develop viable treatments for this debilitating condition.

My wife was diagnosed as having MS in 1991, however, she did experience symptoms similar to those associated with MS about fourteen years earlier but the specialist at that time came to the conclusion that she did not have MS. No reasons were given, but fortunately she had no further problems until 1991, when she was diagnosed after temporary loss of vision in one eye. Although she is not wheelchair dependent, she has the difficulty in getting about and requires help with most things around the house.

From the time she was diagnosed, my wife has only been seen by a neurologist four or five times. Furthermore, she has not had any treatment from the NHS, apart from two courses of intravenous steroids, of which, only the first was effective. Because MS is an ongoing condition, even physiotherapy is not available, at least in the area we live.

My wife and I are fortunate that we can, in the short term, self fund Aimspro, which is making a noticeable difference in my wife’s case, but why should we be forced to self fund? Like most those, I have paid taxes and National Insurance.

Unlike Cancer Research, how often do we hear appeals to raise funds specifically for research into understanding and finding viable treatments for Multiple Sclerosis? NEVER! Multiple Sclerosis is clearly seen as a low priority condition but somehow this has to change.

Although there seems, at this moment in time, to be several potential treatments at various stages of research, I believe until a much greater effort is made in understanding the condition, it could be a long time before treatments are widely available to all in need. Therefore, I feel it is important to stimulate somehow interest in Multiple Sclerosis and raise the necessary funding to finance meaningful research.

While those affected by MS remain invisible and silent, they will continue to be considered a low priority in the overall scheme with respect to the National Health Budget. However, a way has to be found to raise awareness of the desperate needs of those affected by MS so that they are no longer INVISIBLE but deserving those who are entitled to their share of NHS services.

Gordon Ellis, Glasgow

Autoimmune Disease - A Womens Issue

2011-02-21T06:56:00.000-08:00

Many more women than men suffer from auto-immune diseases. In the case of MS it is almost 4 to 1, lupus 10 to 1 and similar with other conditions. A recent study for the GMB Union has shown that women now make up half of the total people in work today, with women outnumbering men in some regions. As women are usually the primary care givers in the home, the effects of suffering from an autoimmune disease reach further than the sufferer. In the coming months we are going to look more closely at why we should make this a women's issue.

Why make this a Women’s Issue?

· Because far more women than men are affected by autoimmune diseases, at least in a ratio of 3:1

· Usually during childbearing years – 17 to 34 years of age, when life’s demands on them are greatest but women can be afflicted at any age.

· The demands placed on women are increasing and frequently include – being the primary carer in the home, working, raising children, caring for grand children and elderly parents.

· When a woman is affected by an autoimmune disease the effects strike at the core of the family.

· Children can cope with a busy mother – but not a sick mother!

· 20% of women affected find themselves deserted by their partners and children.

· Where is the active research into how to solve the problem in women?

· When told by the clinician “There is no cure and very little treatment, go home and learn to live with the disease” too many women do just that, such long suffering and tolerance should neither be demanded nor expected.

· Help and advice are needed by each individual woman diagnosed.

· Charities have to be more actively supportive. Why has the MS Society closed its Respite Centres?

· The earliest possible diagnosis enables the right life style changes to be made.

· A campaign for women by women will encompass all other sufferers – male and female of all ages.

Facebook

2011-02-19T04:50:00.000-08:00

We have launched a new facebook page, please check it out -

http://www.facebook.com/#!/pages/Proventus/198687780157388

Positive Mental Attitude

2011-02-17T01:53:00.000-08:00

A few words from a gentleman who has suffered with MS for 41 years

I have had MS since 1968 ( 41 years ) The first 22 years were Relapsing/Remitting, mainly in remission - I was very lucky. However the last 19 years have been Secondary Progressive, but I have NOT let it affect my Quality of Life (well as little as possible). I believe that this has been due to PMA (Positive Mental Attitude). I have MS but MS has not got me. OK I am now in a wheelchair, but I look on the wheelchair as an aid and not a necessity. OK there is no cure for MS today but there may be a cure tomorrow. MS is NOT the end of life as we know it, It is the beginning of a NEW way of living life.

Bill Irving - Surrey - UK

Introduction to Proventus

2011-02-15T05:51:00.000-08:00

Proventus was founded by a group of people who are themselves experiencing, chronic, progressive, debilitating disorders.

Our Mission Statement

Proventus is completely independant and operated by volunteers
This ensures that what we say and what we do comes from our belief and is not guided or influenced by third parties. It also upholds the real meaning of the word 'charity'.

Our mission is to pursue and support with courage, conviction and open minds all viable treatments and lifestyle options that would improve the lives of those with disabling conditions.
This endeavours to provide the sufferer with a balanced view of all issues instead of them having to listen to only one source of information which which may be biased.

To make an awareness of such treatments known to all. To research and freely make known information concerning all health aspects good or bad.
This enables the sufferer, their famil and friends to be able to make informed decisions and ask probing questions instead of having to readily accept what is told to them. To ensure that the sufferer is empowered instead of being told what they should or should not do.

To create a hub of information relating to various diseases and giving links to to other charities and informative websites.
This assists and eases the effort required when sufferes are searching for information.

To give those a public voice - a voice to be heard.
Many sufferes are invisible to others. They are ignored and in some cases misrepresented. It is time that so many who were ignored by so few were heard.

We have created this blog to reach out to and endeavour to help sufferers who are currently unaware of our presence. We will be posting helpful links and information on drugs, therapies and nutrition, plus news of any events help by Proventus and our progress in raising awareness for sufferers of autoimmune and nuerological disease.