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| ME News and Updates |
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November 2001
Flu jabs - do you need one?
Doctor's practices are full of leaflets and posters urging the elderly and those "at risk" to get vaccinated against flu this winter. But are ME/CFS sufferers "at risk"? The benefits (protection against many strains of the flu virus)
need to be weighed up against the possible drawbacks (an exacerbation of symptoms). Dr Shepherd of the ME Association recommends that any ME sufferers who also has another condition affecting, for example,
the heart, lungs or kidneys) should certainly go ahead and get vaccinated. Anyone in the early stages of ME or still suffering flu-like symptoms (enlarged glands, sore throats, abnormal temperature control) should proceed with care as they may
be allowing a worsening of their symptoms. The choice is personal and should be made in consultation with a GP.
Physically deconditioned? No way!
A Dutch research group has tested exercise capacity and measured heart rates, blood pressure, respiratory function and blood gas levels in 20 people with ME/CFS and compared them to those
in 20 healthy people. The intention was to test the hypothesis that muscle problems in ME sufferers were due to inactivity and disuse (deconditioning). However there was no significant difference between
the controls and the ME patients. In fact 9 of the ME sufferers actually had a better level of fitness than the controls. This evidence backs up previous studies that have suggested that the problem is not the
activity itself but the recovery (or lack of it) that normally happens in healthy individuals.
Source: Psychological Medicine, 2001, 31, 107-114
Funding Research
Nearly £30,000 from The ME Association has been committed to Dr Derek Pheby's research team at the University of the West of England to look into the factors responsible for
causing 25% of ME sufferers to become seriously ill and virtually bedbound. Volunteers for the study will be recruited from various ME self-help groups and information will also be obtained from
the GPs of those taking part in the research.
Change of name
The M.E. Association has changed its name from the Myalgic Encephalomyelitis Association to the Myalgic Encephalopathy Association. This reflects the need to more
accurately define the syndrome and to move away from a description that had little medical support. The new term "Encephalopathy"
is a more generic term, which will anger some sufferers who will see this as a watering down of the severity of their symptoms. However,
it seems more likely that this is a progressive move by the Association which will only serve to encourage a more sympathetic view
towards the illness as it relies less on a term which is very difficult to prove actually exists in sufferers.
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Beware the Web
A recent conference entitled "The Pain Patient and the World Wide Web" analysed the impact of the internet on health issues. A survey found that 56% of American adults
have access to the internet and that people with health concerns are twice as likely as healthy people to look for advice and shop for products on-line.
48% of those who had found information or advice on-line claimed that it had helped them improve their lifestyles. A staggering 70% said that the web influenced their
health decisions and 28% said that the information gained influence whether they visited their doctor or not. But so much of the information is unregulated and
has no more authority than the opinion of an individual. Most health professionals would advice caution and suggest theit doctors as the first line of inquiry. Many
M.E. patients turn to other sources of information in desperation, but you have to ask yourself "Where does the information come from". Is the source reliable?
Is someone trying to gain financially from it? It is safe to trust the major ME/CFS organisations such as the M.E. Association, and the information on this website either comes from personal experience,
or from previously published work.
I make no personal claims for miracle cures or panacaeas - I would advise just being sensible and careful about what you do to your body. Many therapies that are described as "natural" may use
substances found in nature, but not at the doses found in nature. It is often worth taking a holisitc approach to the illness rather than placing an emphasis on any one drug or treatment. Beware!
June 2001
ME Association Research Funding
The ME Association has agreed to fund, via its Ramsay Research Fund, a major study into factors which may be
involved in the development of ME/CFS. Dr Derek Pheby at the University of the West of England will carry out the
research. The ME Association has funded projects to the tune of £320,000 over three years, which is especially
remarkable considering that all of the money has come from donations and fund-raising events!
Source: ME Association
Positively negative thinking
A controversial report has been published which concludes that people who were "re-educated" to accept that their symptoms
were more likely to be due to psychological problems and deconditioning of the muscles than physical abnormalities were also more likely to
show a "substantial improvement" of their condition.
The report by a group of scientists from Liverpool and Manchester universities was published in the British Medical Journal
which, because of its circulation amongst many health professionals and GPs, may be significant in forming attitudes towards correct treatment.
It is significant to note that the UK government has already accepted that
ME/CFS is a physical disease and such "evidence" can only serve to harm the interests of people who know that they are physically unwell.
Source: ME Association
Strange behaviour
A second report by a multi-centre research group in the Netherlands, published in Lancet, described the effectiveness
of cognitive behaviour therapy (CBT) for treating sufferers of ME/CFS when compared to a level of support given by social services
or compared to no support at all. Much empirical evidence from sufferers themselves suggests that CBT is not effective, and in some cases
worsened the condition of th patient.
Source: ME Association
German antagonists
A group of German scientists have tested the effectiveness of drugs known as 5-HT3 anatagonists which block the effect of serotonin in
areas of the central nervous system that are involved in causing nausea and vomiting. These drugs are often used in cancer treatment to prevent
vomiting after chemotherapy. The preliminary results of the study showed some positive benefits to patients sufferinf from ME/CFS.
Source: ME Association
Chief Medical Officer's working group
The CMO Working Group is in the process of submitting its final report to the CMO, Professor Liam Donaldson. Conclusions and recommendations
will be made after several months' worth of cogitation! The results will be eagerly awaited by all of those suffering from ME/CFS. Regular briefings
on this matter can be seen at www.doh.gov.uk/cfs-me.htm.
Source: ME Association
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