- Genes and systems analysis
- Definitions and diagnosis
- Circulation and the blood
- Clinical trials and therapies
- Brain and nervous system
- Exercise and muscle
- Pain and sensitivity
- Children and young people
- Research infrastructure
- Programmes of research
Monday, 19 May 2014
In early 2014, ME Research UK reached a milestone, topping the £1 million mark in grants awarded to researchers. This represents 35 specific biomedical projects, the results of which have now been published as 58 research papers in peer-reviewed scientific journals. We can be proud of this record, and we know that none of it would have happened without the hard work and generosity of patients, their families and friends, and other ME organisations (such as the Irish ME Trust, the John Richardson Research Foundation, and Irish ME/CFS Association) sharing our belief in the need for biomedical research. To mark this achievement, we have produced a special 32-page edition of Breakthrough magazine, entitled ‘£1 million of biomedical research’.
To download a copy of the magazine, click here
Written in plain English, its aim is to give non-scientists an easily digestible overview of the research we have funded over the years, alongside a list of the projects and the scientific papers published. It also discusses some of the less well-known aspects of research funding, such as the need for programmes of research that continue year-on-year. The research is classified into subject areas to illustrate the breadth and range of the scientific work, as the contents illustrate:
Our research has taken place at institutions in the UK and overseas, and has involved many of the systems of the body. To date, the most important findings have centred around the autonomic nervous system, which controls some core body functions such as heart rate, digestion and breathing; the immune system, which protects us from infection; the circulatory system, particularly the heart and blood vessels which supply oxygen to tissues; and the musculoskeletal system, which is a source of pain and fatigue for many people with ME/CFS. As the body works as a single functioning unit, however, the research findings on one system of the body can also apply to another (immune cells are carried in the blood circulation, for instance). This is why different aspects of a particular study are sometimes mentioned under other headings in this special edition of Breakthrough magazine.
It is worth remembering that without our involvement, impetus or funding (alone or with partners), most of the studies described in the magazine would never have taken place. For instance, Prof. Julia Newton’s research on autonomic dysfunction at the University of Newcastle would not have begun and flourished into the much larger programme we see today; and the Vascular and Inflammatory Diseases Research Group at the University of Dundee would not have uncovered a range of abnormalities in blood and blood vessels. Similarly, Prof. Jo Nijs’ programme in Belgium that is focused on exercise, immunology and its consequences, as well as single investigations such as the exploration of retrovirus in Swedish patients or the experience of pain in Scottish patients, would not have been instigated or completed without our financial assistance.
So, what does our overview ‘£1 million of biomedical research’ reveal? Well, the most important lesson is that physiological abnormalities and biological anomalies can be found in ME/CFS patients if scientists have the funding – and the drive – to uncover them. For too long, the prevailing wisdom among some policy makers and healthcare professionals was that scientific investigation was largely unnecessary, since the primary disturbance in people with ME/CFS was psychological. We now know this to be false: scientists can certainly find physical abnormalities – e.g. autonomic nervous system dysfunction, neutrophil apoptosis, arterial stiffness, impaired recovery from exercise, increased oxidative stress – and nonspecific psychological therapies are not cures.
Our research overview also points up a crucial fact – that biomedical research is a long-term enterprise, involving decades-long commitment by researchers and funders. This is true for all chronic illnesses, but particularly for ME/CFS which has a surprisingly meagre research base. As the stark figures reveal, the Pubmed research database presently lists 106,120 articles on type 2 diabetes and 60,480 on multiple sclerosis, compared with an all-time figure of just 6,410 for ME/CFS (which is twice as prevalent as multiple sclerosis). This is why scientific progress sometimes seems to be glacially slow, but it is also why, nolens volens, building a global biomedical infrastructure is an absolute necessity. Most often, it’s only after a critical mass of investigators has produced a critical volume of biomedical data that patterns begin to emerge and fruitful leads begin to become apparent. Of course, it’s also important to maintain support for current researchers; funding one-off investigations is one thing, but real breakthroughs in modern science, particularly those on chronic diseases, come at the end of longer programmes of painstaking work. That’s why we’ve tried to provide continuing project-on-project support to specialist groups of researchers early in their investigations when it can be particularly tough to get funding.
The key to progressing biomedical research is funding, plain and simple. It is very hard for researchers to get class 1 funding (from sources like the MRC, NIH or NIHR) which is highly competitive, tends to be one-off, and often requires applications based on pre-existing pilot data. That’s why they rely on charities; in fact, a significant proportion of research funding for all diseases comes from charitable sources (£1.1 billion each year in the UK alone). This is what makes the role of ME Research UK so important. We have we funded more specific biomedical projects on ME/CFS than any other organisation outside of North America, and are proud of what we have achieved, but we need to get cracking on raising the next £1 million.
Please help us if you can.
Monday, 12 May 2014
This is another poem from “Echoes Of Eternity” by Michael R Abbott; used with permission. Today, 12th May, is actually International ME Awareness Day - a good time to remember that God is sovereign over all and, for those who are His, whatever our circumstances, "the eternal God is thy refuge, and underneath are the everlasting arms" (Deuteronomy 33 v 27.
The Sovereignty Of God
The Lord, in glory, reigns supreme,
Angels declare this wondrous theme:
"Omnipotent, He reigns on high."
"Amen," our mortal lips reply.
O'er all the earth, His power holds sway:
His will is done by night and day.
Let men deny His truth and might:
It cannot change His sovereign right.
The sands of time are sinking low,
And sin abounds that men might know
The righteous judgments of the Lord,
The vengeance of His flaming sword.
Though buildings close and meetings cease,
The Church of God shall still increase;
For, added to the host above,
Are those saved daily by God's love.
The powers of darkness have their way,
But never shall they win the day:
"Thus far," the Master has decreed,
And there they halt and then recede.
Soon shall the glorious day appear
As, to His Church, the Lord draws near,
To take her for His Holy Bride,
To reign forever at His side.
If you would like further information about International ME Awareness Day, I've posted links to a few websites below; I'm sure there are many more -
Facebook - https://www.facebook.com/may12th.awareness
May 12th International Awareness Day website - http://www.may12th.org/
The CFIDS Association of America - http://solvecfs.org/international-awareness-day-for-mecfs-and-fibromyalgia/
Tuesday, 6 May 2014
Taken from the ME Global Chronicle 4 - http://bit.ly/1kDkjKX
The Half Remarkable Question? ME or CFS
Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS): The need of objective assessment, accurate diagnosis, and acknowledging biological and clinical subgroups. An Extract -
Although Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are often considered to be synonyms, the diagnostic criteria for ME and CFS define distinct clinical entities.
Cognitive impairment, (muscle) weakness, circulatory disturbances, marked variability of symptoms, and, above all, post-exertional “malaise”: a long-lasting increase of symptoms after minor exertion, are distinctive symptoms of ME.
This latter phenomenon separates ME, a neuro-immune illness, from chronic fatigue (syndrome), other disorders and deconditioning. The introduction of the label “CFS”, but more importantly the diagnostic criteria for CFS have generated much confusion, mostly because chronic fatigue is a subjective and ambiguous notion.
CFS was redefined in 1994 into unexplained (persistent or relapsing) chronic fatigue, accompanied by at least four out of eight symptoms, e.g. headaches and unrefreshing sleep.
Since the diagnosis ME doesn’t require “fatigue” and post-exertional malaise and cognitive impairment are not obligatory for the diagnosis CFS, the criteria for ME and CFS define two different patient populations.
However, most of the research into ME and CFS in the last decades was based upon the multivalent CFS criteria, which define a heterogeneous patient group.
Due to the fact that fatigue and other symptoms are non-discriminative, subjective experiences, research has been hampered. Despite the use of subjective and ambiguous criteria and measures, research has established typical abnormalities in ME/CFS repetitively, e.g. immunological aberrations, oxidative and nitrosative stress, neurological anomalies, circulatory deficits and mitochondrial dysfunction.
After describing the context, including the controversy about the nature of ME and CFS, the diagnostic criteria, the etiology, the pathophysiology and presumed effective therapies (Cognitive Behavioral Therapy: CBT and Graded Exercise Therapy: GET), this article reviews the historical context of ME and CFS and the diagnostic criteria (Ramsay, Holmes, Fukuda and International Consensus Criteria) and substantiates why ME and CFS are two partially overlapping, partially disjoint clinical entities.
After stressing the importance of an accurate diagnosis, the article proposes various methods to assess characteristic symptoms objectively. Various authors have questioned the physiological nature of the symptoms and qualified ME/CFS as somatisation.
By using objective measures endless discussions due to using questionnaires and subjective measures can be avoided, e.g. with regard to the physiological origin of symptoms, the level of disability, and the proposed positive and/or negative effects of CBT and CGT in specific patient well-defined groups.
The article then summarizes various characteristic abnormalities which have been repeatedly observed in ME/CFS patients or substantial subgroups repeatedly and the potentially relevant clinical and biological subgroups.
The remainder of the article focuses on recommendations for improvements of patient care (assessment and diagnosis) and more effective research in the future.
To improve future research standards and patient care, it is crucial
* that patients with post-exertional “malaise” (ME) and “CFS” patients without post-exertional phenomena are acknowledged as two separate clinical and research entities;
* that typical symptoms of ME and CFS are assessed objectively as much as possible; by using repeated exercise tests (CPETs) and cognitive tests;
* that the diagnosis of ME and CFS in research and clinical practice is based upon accurate criteria;
* that well-defined clinical subgroups of ME and CFS, e.g., patients with orthostatic intolerance or patients with sudden-onset, are investigated in more detail;
* that biomarkers, e.g. immunological status in rest and after exertion, are used to distinguish and investigate biological subtypes in research;
*and that trials into the efficacy of therapies use objective measures of the clinical status and biomarkers to establish the effects of these therapies in ME or CFS patients or subgroups thereof impartially, e.g. by a (positive) change in the oxygen uptake at the anaerobic threshold and cognitive tests scores.
Frank N.M. Twisk
Full-text available through:
Thursday, 1 May 2014
I thought that this is an interesting article on the Natural News website –
3 common medical procedures that ruin your long-term health
Tuesday, April 29, 2014 by: Derek Henry
(NaturalNews) Today's custom is that if a person has a more serious health issue, conventional medicine is the unquestionable source of answers. Although results often appear to be helpful and "life-saving" on the surface, there often comes serious long-term damage that severely compromises quality of life. In that vein, here are three hospital procedures that can ruin long-term health.
Chemotherapy has been widely used with one or more cytotoxic drugs, with the expectation that this deadly poison will kill off rogue cancer cells and leave the patient with enough healthy cells to regain their health.
Researchers from the Fred Hutchinson Cancer Research Center in Seattle, Washington, observed the effects of chemotherapy on healthy cell tissue and found that it damages the DNA of healthy non-cancerous cells which in turn causes them to produce molecules that in turn produces more cancer cells.
Even worse, they also found that a major side effect to this procedure is that cancer cells grow more virulent than they were before the treatment. As a result these "super" cancer cells no longer respond to chemotherapy, which means it becomes even more deadly.
Take a more natural approach to kill off cancerous cells, without severely damaging the body, and look to eliminate all forms of sugar.
Vaccines have become a heavy debate that has left many people wondering whether vaccinations are the panacea to all the dreaded illnesses we can contract, or simply a poisonous injection that has little effectiveness compared to a healthy and holistic lifestyle.
Recently, shocking statements were noted on the package insert of the "Diphtheria and Tetanus DTaP Toxoids and Acellular Pertussis Vaccine Adsorbed" (also known as the Tripedia vaccine) that stated that this vaccine had not been evaluated for its "carcinogenic or mutagenic potentials or impairment of fertility."
It was also noted "adverse events reported during post-approval use of Tripedia vaccine include idiopathic thrombocytopenic purpura, SIDS, anaphylactic reaction, cellulitis, autism, convulsion/grand mal convulsion, encephalopathy, hypotonia, neuropathy, somnolence and apnea. Events were included in this list because of the seriousness or frequency of reporting."
However, some may believe that vaccine side effects are worth the long-term immunity they provide against infectious disease, as opposed to building up natural immunity. Barbara Loe Fisher, president and co-founder of the National Vaccine Information Center, explains the error in that thinking:
"Whereas natural recovery from many infectious diseases usually stimulates lifetime immunity, vaccines only provide temporary protection and most vaccines require 'booster' doses to extend vaccine-induced artificial immunity."
So to maintain that artificial immunity, people are often subject to additional injections full of dangerous preservatives and agents, which puts their long-term health at more risk.
Take a more natural immune building approach by increase immune building foods and herbs and getting plenty of vitamin D, while reducing and eliminating processed foods, refined sugar, alcohol, and glutinous grains.
Prescription antibiotics are perhaps the most widely used form of medication, and have saved the lives of many with deadly bacterial infections. However, much like chemotherapy, antibiotics do not distinguish between good and bad, and as a result wipes out all bacteria in its path.
With more than 100 trillion good bacteria in the body (10x more than cells) that play a critical role in overall health and well-being, killing them is not an effective answer to maintain good health. In fact, destroying those helpful bacteria will slowly but surely destroy digestive and immune function, which can then result in severe complications like Candida and cancer.
Look into more natural antibiotics like garlic, colloidal silver, oil of oregano, Echinacea, and manuka honey.
Sources for this article include: