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August 26, 2004 • 12:06 pm Comments Off
Allergies And Sensitivities – Rosamund Vallings MB BS
Many people get confused about the differences between allergies and sensitivities, so this article is an attempt to clarify this.
People who suffer from true allergies are described as atopic individuals, and there is a strong genetic component. An allergy is a reaction to foreign protein, and can manifest itself as hay fever, asthma, eczema, urticaria, or gastro-intestinal effects. It is associated with histamine release and high circulating levels of immunoglobulin E (IgE). At the same time the eosinophil count in the blood maybe increased. Reactions can vary from very mild and easily manageable to life-threatening and severe (anaphylaxis).
Allergies are usually life-long and may get more severe with each exposure. Treatment/control involves avoidance, when possible (eg a food allergy to pork) and use of antihistamines, protective medication, steroids or desensitisation. Antihistamines are useful to treat the acute attack or some people prefer to take them regularly to prevent symptoms. Protective medication such as sodium cromoglycate can be used as eye drops, nasal spray, inhalent or in tablets to protect the gut. Steroids are used sometimes to help prevent symptoms developing or to lessen the symptoms in very acute reactions. Desensitisation may involve many weeks or even years of injections, but is a particularly useful approach for those with life threatening allergies such as to beestings. Anaphylaxis is usually treated in the first instance with adrenaline injections and resuscitation. Symptoms maybe helped with steroids and antihistamines if the reaction is not too severe. Hospital admission is usually required, and these people need monitoring carefully for several hours, as they may get a rebound reaction when adrenaline wears off.
Allergy reactions maybe promoted or worsened by salicylates this includes aspirin, non-steroidal anti-inflammatory drugs, herbs such as willow bark and foods with high salicylate content (eg strawberries). So occasionally a diet low in salicylates can be helpful.
Sensitivities on the other hand are reactions that develop due to over-exposure to a foreign chemicals, food etc. There is not the same histamine release effect as in allergy, reactions are rarely life threatening and will be temporary rather than lifelong. Symptoms maybe very variable and can affect any system of the body. Headaches, sore throats, rashes and gastrointestinal bloating are frequent symptoms. To get a sensitivity reaction one must have a buildup of the sensitising agent till it reaches a particular threshold, then a reaction may occur. For example if one ate excesses of any particular food eg tomatoes every day, one would finally reach a threshold and react, if on the other hand, one only ate the offending food twice a week in moderation, one would probably never react. Similarly it has been shown that exposure to more than one chemical at a time is more likely to cause reaction than exposure to any one chemical alone. Avoidance of high levels of exposure seems therefore to be the key to prevention of these reactions, and this is the basis of the rotational approach to eating.
Sensitivity reactions will not usually be helped by antihistamines unless the reactions are quite severe, when an antihistamine can for example help alleviate an itchy rash. Steroids are not usually of any benefit either. However the protection with cromoglycate can sometimes be useful for inhaled irritants or those affecting the eyes. Desensitisation is not appropriate for sensitivity reactions. There is no specific treatment for sensitivities avoidance is the best option coupled with understanding the threshold issue.
So what is happening to those with CFS/ME. There is a strong link between getting the illness and a history of atopy (allergy), suggesting a possible genetic link in some families. Allergies also tend to worsen in those with CFS probably because the immune system is highly activated. Those with CFS also seem to have a lower threshold for developing sensitivities, but the good news is that these are not usually permanent and will decrease if exposure is minimised and disappear altogether with recovery. So just because a person seems to react to a particular food for example, they do not have to avoid it forever more, such as they might have to if they had a true severe peanut allergy reaction.
Many people with CFS have experienced severe gut problems after eating, and in the past there has often been an assumption that some sort of allergy or sensitivity has been responsible. Current research now indicates that it is much more likely to be the effect of loading the stomach with more than it can comfortably handle, then blood has to be diverted to the stomach to cope with digestive processes, leaving the brain and other vital organs with less oxygen, which of course leads to feeling dreadfully ill. You may question the fact that this does not happen to healthy people. The likely explanation is that those with CFS may have a lower blood volume, low blood pressure and less good circulation, which means less oxygenated blood is available to keep the other organs in good working order at the same time as a big digestive event. This problem can usually be overcome with careful attention to eating very small quantities little and often, thus avoiding overload.
If a person is unsure about whether they are suffering allergy, sensitivity or another physiological event, laboratory skin and blood tests, avoidance, trial of antihistamine, change of diet, change of environment etc may give some clues. Most reactions are manageable with minimal intervention. Occasionally it will be necessary to seek the advice of an allergist or immunologist for further advice, but do be sure you choose someone who is medically qualified with good understanding of these most complex issues.
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August 26, 2004 • 12:06 pm 0
Are Supplements Important In ME/CFS? – Rosamund Vallings MB BS.
First of all we need to decide what we mean by supplements. They are in fact extras that we take, over and above what we normally obtain in the daily diet, and for most of us, the diet is more than adequate. There is good evidence that for healthy people supplements are unnecessary. There is a great deal of advertising hype around that makes even the most healthy of us feel that we are somehow lacking, and need to be firing ourselves up with many things, which if over-indulged could in fact prove toxic. The main side effect however is on the pocket, with ever increasing costs and a feeling enhanced that the more costly the preparation the more good it is likely to do. I know of many mothers who are made to feel quite guilty because they are not tanking up their offspring with the latest marvel!
However there are occasions when some form of supplement maybe entirely appropriate, and we all need to take a common sense approach to this. There are probably 5 main areas where supplements can be important.
1.The person maybe on a restricted diet of some sort, and may need for example to add extra calcium if they have no dairy products, or iron if they are vegetarian. Or they maybe unable to eat properly because of illness.
2.There maybe a proven deficiency on testing such as iron deficiency anaemia or low potassium, indicating a need for added iron or potassium. However the cause of the deficiency should always be carefully investigated as other treatment strategies maybe needed. Deficiencies may occur as a result of lack of absorption, loss (eg diarrhoea, blood loss), metabolic disorder or endocrine problems. For example a woman with very heavy periods may well become anaemic, but she should be thoroughly investigated, as there are many causes of anaemia, and her problem should be treated medically if possible.
3.There maybe phases in life when a particular supplement is recommended such as in pregnancy or inactivity. However these days most deficiencies are avoided in most health situations by care with diet.
4.There are certain supplements which may be indicated as a preventative approach. We now know for example that there is less likelihood of neural tube defects if a woman takes folic acid in pregnancy or calcium can be taken to help minimise the ageing effects of osteoporosis.
5.There maybe certain supplements over and above dietary intake which have a beneficial effect in a particular disease. This is where we come into the realm of CFS/ME.
Over the years many people with this illness have tried a wide range of supplements in the hope of finding the magic cure, but in general there has been very little benefit despite spending often enormous amounts of money. There have however been some interesting areas of research which give some guidelines as to what maybe appropriate. It is always hard to measure effects, particularly if one is taking a number of different things, and there are so many other variables. You can certainly be tempted by some of the mixed preparations, with sometimes a list of 30 components on the side of the container. These things will rarely be of much use as there usually too little of anything to be of much value if it happened to be needed. They may also contain some things to which the person with CFS maybe very sensitive even in small quantities or the person may already have too high a blood level of a particular component. Some of the potential benefit therefore maybe offset by a small toxic reaction. If one is going to take anything at all, it is better to stick to trialling one preparation at a time, and concentrating on those things where there has been some proven research benefit, or some research showing potential. You really need to try something for a month at least before you can judge if there is any benefit, or before you add anything else to the cocktail.
Most minerals and vitamin supplements have not been shown to be of particular benefit in CFS, but there are a few areas of interest and potential. Salt supplementation has certainly been shown to have use in those with CFS who have a very low blood pressure, causing symptoms of light-headedness and slow thinking, which is often due to poor brain oxygenation. Extra salt taken regularly through the day can expand the blood volume, which maybe low, and improve circulation. Salt can of course easily be incorporated into the diet, but some find this hard and salt tablets or capsules may be easier. If you are having this high salt intake, it may be necessary to have added potassium, and this should be carefully monitored with regular blood tests as potassium can be very toxic. There has been some research to show that some with CFS have low total body potassium, but extra supplementation does not appear to improve this.
A number of researchers have looked at the issue of magnesium supplementation after the issue was raised some years back by researchers in England. There was an era when it was being given intramuscularly, but it seems likely that taking a magnesium supplement by mouth is well absorbed, cheap and easy, and there is no apparent extra benefit from injections. Magnesium is an important body mineral and it is thought that for some with CFS, some of the muscle problems may be helped. However it is important to have blood levels of magnesium checked as it can be toxic and some people do find it gives them abdominal cramps and diarrhoea even in small amounts. If you are going to take magnesium, do not be tempted to buy the expensive combination with malic acid. While malic acid does improve absorption, it is in fact a main component of apple juice, so the old adage of an apple a day seems highly appropriate here. You can just take the magnesium with a swig of apple juice.
Zinc is used up a great deal by the typically active immune system in CFS, so again a small supplement can be useful for some. We can however check blood levels easily to see if it is likely to be of use. Zinc is stored well, so that often short courses are all that is needed say month on, month off etc. If you are having too much zinc, there is usually a metallic taste in the mouth. Zinc can also be a little nauseating, particularly if you do not actually need it.
Calcium can be helpful for several reasons. If a person is very inactive, they are more prone to osteoporosis, which can be serious, and extra calcium can help to prevent this, particularly if the diet is low in dairy products, our main source of calcium. Calcium should be taken late in the day, and can also help those who are troubled by legs cramps at night. If a person is inside a lot because of illness, the lack of sunlight can affect their vitamin D absorption, which is all tied in with calcium metabolism, so a blood test to assess vitamin D maybe useful, and this supplemented if necessary. However vitamin D is not a water soluble vitamin, and care should be taken to not take more than required.
The B vitamins have been of interest in CFS. Vitamin B12 injections have been used for over 40 years to alleviate fatigue particularly in the elderly, and apart from those suffering pernicious anaemia, due to poor B12 absorption, we have not really understood what mechanism is actually involved. However research continues, and we are getting a better idea now of what maybe going on. Certainly a number of people with CFS do seem to improve with a course of B12 injections, and the benefits seem to last far longer than we would expect from a simple placebo effect. Some Scandinavian research has indicated that the levels of B12 maybe low in the cerebro-spinal fluid, while the blood levels appear normal. This is the fluid surrounding the brain and spinal cord. B12 in needed by brain cells for efficient function. Having B12 by mouth has very little benefit as you only absorb it minimally and probably not at all if your blood levels are normal. So, having it by injection maybe useful for possibly about 60% of CFS people. The benefit may not be apparent immediately, some people find it takes about a month of weekly injections before they feel any better. B12 is a water soluble vitamin, and the body can therefore easily rid itself of any excess. In quite big dose trials being done overseas, there seems little risk of side effects or long term ill effects. If you are having B12, it is important to also take a mixed B complex tablet daily as the other B vitamins (particularly folic acid) can get out of kilter. Some women with CFS, who may have a worsening of symptoms premenstrually do find vitamin B6 (pyridoxine) can be helpful, but it is of no use taking it just around period time, as it needs to build up to be of benefit and taken daily regularly.
Work in Newcastle, NSW has indicated that some amino acid imbalances can occur in CFS. It is hard to suggest suitable supplements for this unless you have had some of their tests done, as the discrepancies can be very individual. The one amino acid that does however seem to be frequently depleted in this illness however, is serine. Serine is a precursor of serotonin, an important brain chemical giving a sense of wellbeing and energy. While the hit and miss approach is generally to be avoided, serine does seem to be very safe, and a trial maybe worth considering. Again though, it is wise to use this alone rather than in a mixture of amino acids.
Another amino acid called carnitine has created a lot of interest in CFS following research in Japan and Belgium. Carnitine has been shown in some studies to be depleted in certain parts of the body, but although there is some potential here, the dose would probably need to be very high and taken long term, and this is an expensive supplement. More studies are needed in this area.
A lot of the rheumatologists are now recommending glucosamine for those with joint problems, particularly osteo-arthritis. While this may not be useful for the majority of those with CFS, some of you will perhaps have early arthritic problems just because you have got older, and this seems a safe and reliable supplement, and could alleviate one area of added pain.
Fatty acid supplements using evening primrose oil (or its equivalent marine source) or flax seed oil have also been researched. An early study in Glasgow showed that about 60% those with CFS had some improvement with evening primrose oil. Some people do feel worse on this. And more recently, the Newcastle team have shown that there are some changes in blood lipids which tie in with this and help to explain why some do benefit and some feel worse. However they find that for the 40% who do not benefit, about 20% should possibly try flax seed oil, as they have a different lipid profile. However you should not take both, as they tend to offset each other.
It was fashionable for a while for those with CFS to go onto very high dose mega vitamin preparations. This approach is certainly not recommended. We now know for example that many with this illness maybe worsened by high dose vitamin C, as the immune system is often already very overactive, and Vitamin C may aggravate this condition. It has also been shown that many cases of Irritable Bowel Syndrome (a closely related condition) have been due to or aggravated by vitamin C excess and sufferers improve enormously once they stop the supplement. This does not mean avoiding vitamin C altogether as one has to have a regular daily intake as a food source (eg fruit/vegetables) to maintain normal health.
With all the above suggestions, it is important to realise that everyone is different and there are also many sub-categories of CFS, so what helps one person, maybe totally inappropriate for the next. Also it is important to always remember that more is not necessarily better, and may in fact be dangerous, toxic effects should be watched for and blood levels monitored when possible. Remember too that you are more likely to absorb a mouth-watering tasty meal than a handful of vitamin pills. Once you start to salivate when you see or smell good food, the digestive process has already begun. I wonder how many people salivate in response to pills! Cost should always be a consideration too, and just because something is more expensive, it is not necessarily better. Often the cheapest specials at the supermarket or chemist are your best bet. Some of the above are also available on prescription.
In this discussion, I have only talked about the usual over-the-counter supplements, and there is a whole raft of hormonal and other medically prescribed supplements that could be of help for some people, but this will have to be the subject of another article.
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August 22, 2004 • 4:11 pm 0
Helped By Bowen Therapy (May 2004)
I have had ME for five years. I have tried just about everything recommended by the Support Group, including Q10, Nadh, acupuncture, restricting foods,etc.
Last November I read a Dominion Post article about Bowen Therapy. I gave it a try and had weekly treatments in November and December.
The treatment was good on the day, but I was very ill the rest of the week. Then I took a break over the Christmas holidays.
In the second week of January the treatment kicked in and I havent been sick since. In fact, I have trouble controlling all this excess energy I have.
I now have a monthly top-up treatment, but only because I enjoy it, and I am a cautious person and dont want a relapse. I have even managed to recover from a cold quicker than my daughter, and without spending a day in bed!
The treatment I had was initially $45 for an hour, then $40 for successive treatments. My therapist was Hai Yan Tan at the Willow Tree Clinic in Brandon Street. You could get treatment elsewhere, but I would recommend Hai Yan, as she is the first true healer I have ever met.
Iris Christopher.
What Is Bowen Therapy?
The following description is quoted from a pamphlet issued by the clinic.
The Bowen Therapy, pioneered by the late Tom Bowen of Australia in the 1950s, is a body treatment that utilises one of the most effective hands-on techniques… Today, the Bowen technique is also called Bowtech.
The therapy aims to stimulate, support and boost the natural healing capabilities of our body. It is based on the fact that the body can effectively and efficiently adjust, adapt, optimise and mobilised to heal itself once it is fully relaxed and well-prepared, and that this process continues as the conditions allow once the healing power is set off.
By affecting the body’s circulation, endocrine, lymphatic, metabolic, and autonomic nervous systems, Bowtech helps balance, harmonise, and improve energy flows, thereby creating homeostasis equilibrium at the cellular level.
Differently from a deterministic therapy that depends mostly on drugs in treatments, Bowtech relies on no drug but hands-on operations at multiple muscle locations, stimulating the body’s immune and healing responses to address various diseases and illnesses.
It is holistic in that it addresses the body as a whole rather than just treating a few presenting symptoms, thereby embracing the physical, chemical, emotional and mental aspects of each person receiving Bowen treatments.
Certified Bowtech practitioners are required to adhere to a professional code of ethics.
Filed under: Newsletters
August 10, 2004 • 3:15 pm Comments Off
Chatting online about CFS – What is IRC?
You can chat online by using IRC (Internet Relay Chat).
IRC is a multi-user chatting environment on the Internet. It allows people all over the world to communicate with each other as though they were using a telephone (except that they have to use their keyboard).
How does IRC allow the chatting
The IRC environment is made up of several networks. You join a network using one of the servers available. Each network carries hundreds of channels. Each channel can have from two to hundreds of people chatting. The best way to imagine this is that you are a passenger on a train. The train is IRC software. The railway line the train travels on is the network. The stations are the servers. The carriages are the channels. And the people in the carriage are the people you can chat with.
So If you travel on the Johnsonville line you can get on the train at certain stations and get onto any carriage and chat with any of the people there. But if you get on a train on the Upper Hutt line there are different stations, different carriages and different people to talk to. You can’t talk to the people on a carriage on the Johnsonville line. Just like you can change carriage you can change channel, and you can be on more than one channel at once.
How can I use IRC?
First you must down load the software. mIRC
Once you have downloaded and installed your software you must log on to a server on one of the networks. The networks used by PWC (people with CFS) are.
- Undernet
Use the server: irc.stealth.net
Use port: 6667
Channels available: - DALnet
Use server: irc.dal.net
Use port: 6667
Channels available:- #upscm
- #MEchat
You will need a ‘nick’ or ‘nickname or ‘handle’. This is what people will know you by. Just pick one, say your cats name. if it is already being used pick another. Remember that people can hide behind their ‘nicks’ so be careful what you reveal. Never ever give out your phone number or address or email address on an open channel. I have found the CFS/ME channels to be safe and friendly places, so don’t worry too much just be careful.
Once you have logged into an IRC network, you can join your favourite channel by typing:
/join channel name
Remember that a # precedes all channel names. eg /join #cfs.
What IRC commands do I need to know?
All IRC commands begin with a / character. Anything that does not begin with a / is assumed to be a message that is sent to everyone on your channel. Here are a few basic commands to help you get started:
| /JOIN |
Join the named channel. Precede the channel name with a “#”. (Example: /join #CFS ) Everything you type that does not have / in front will now be seen by everyone else on the channel |
| /NICK nickname | Change your nickname. |
| /WHO #channelname | Displays a list of people on the channel including nickname, user name and host, and real name |
| /HELP | Displays help on all IRC commands |
| /HELP BASICS | Displays a command summary |
| /QUIT | Exits irc |
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August 10, 2004 • 2:47 pm Comments Off
Mycoplasma
November 1999 (revised and updated September 2002)
Here’s a guide to mycoplasmas what they are, where they lurk, and how to
get them to move on.
Pathogens (bacterial and viral) are intracellular: their “modus
operandi” is to take over the host cells’ DNA, hide inside cells to
reproduce and then break out of the cell, carrying a piece of the cell
wall with them as a “shield” to stop the body’s natural immune system
from hitting the “foreign!” alert button. No wonder they’re likened to
“stealth” viruses.
Mycoplasma is one of these little critters, along with others such as
rickettsia, chlamydia pneumoniae, and the agents which cause Lyme
Disease. They are tiny in fact they are the smallest free living
organisms you can get.
Mycoplasma is contagious: 56% of people with CFS, Gulf War Illness etc
on the Mycoplasma Registry reportedly had an airborne, contagious onset.
There’s also controversy over whether it can be spread through the human
population from animals. ME/CFS activists in the USA have a political
campaign to get mycoplasma categorised by the CDC as a reportable
contagious disease in the blood.
Two major problems which hinder research, diagnosis and treatment are:
- How do you find these pathogens?? They do not induce antibody
formation, so garden-variety lab tests for antibodies are meaningless.
Patients must have PCRs to detect them. Luckily DNA-based technology has
developed in recent years to facilitate the highly sensitive and
specific detection of mycoplasma and its 4 identified sub-species: M.
fermentans, M. penetrans, M. pneumoniae, and M. hominis. - How do you treat mycoplasma? Here’s the problem: only certain
anti-biotics are effective, and mycoplasma pathogens reproduce in weird
places that are difficult to treat, eg. bone marrow, lymph nodes and
brain tissue. Because of these cunning hide-and-seek tactics of
mycoplasma pathogens, long-term antibiotic treatment, including IV
treatment, is necessary. Names like ampligen and doxycycline might sound
familiar.
The kind of timelines for treatment that are emerging (anecdotally)
suggest it could take 6 months to 3 years to clean mycoplasma out the
system and become ME/CFS symptom-free.
But that’s not necessarily the end of it, since there are no long-term
studies yet on whether the critters can sneak back in at a future point
in time. The other problem is that most doctors are understandably
hesitant to prescribe long-term treatment that is experimental, risky,
and probably not covered by insurance. (But then, living with this
illness isn’t so great either.)
So read on for details about how to access a test, to at least isolate
the possibility of mycoplasma.
Testing for Mycoplasma Infections
Our look into mycoplasma found yet more questions than answers, in the
quest for where to get a mycoplasma test.
At the “top of the pops” are the bold claims of Prof Garth Nicolson and
Nancy Nicolson in California USA, that they have devised a different and
BETTER mycoplasma test than anyone else, and that their high number of
“positive” results in PWC’s is significant. The blurb from the
organisation Nicolson works from includes the following:
“MYSTERIOUS MYCOPLASMAS were nearly un-detectable until Dr. Nicolson
employed a DNA analysis technique called Forensic Polymerase Chain
Reaction. The system of doing the blood tests twice to check the
results prevents the hardship to patients who might receive false
negatives from other laboratories.”
But PCR tests don’t come cheap, and critics argue that results may be “false positives”. At least they claim a greater accuracy than salivary tests, for example, which are nothing but a waste of money because most people will probably test positive to the very common – and harmless – pathogen in salivary form. The CDC (itself criticised on many fronts) claims no link between mycoplasma and ME/CFS, and its fact sheet actively discourages PWC’s from getting tested. So “buyer beware” is especially pertinent in this area.
So assuming you have hundreds of dollars to spare, what testing is available in this end of the world? Well, the Waikato test is no longer available, so that leaves the labs in Melbourne or Sydney, Australia. Going there in person seems to be the only really accurate way to ensure your blood is tested within the 8 hour window period. Either that, or shell out plenty of $$$ (and crossed fingers) for the expense of a reliable international courier service. The Wellington ME/CFS Group has researched and found that World Couriers are a reliable courier to get blood specimens across the ditch in the requisite timeframe. (Anecdotally it seems that post-September 11 nerves have increased the likelihood of quarantine delays, so your expensive courier may still arrive too late for an accurate test result.)
Aaarrrggghhhh – who knows? All I can conclude is that it seems both
mycoplasma testing and the results are still very much in the area of
research, and outcomes cannot be guaranteed.
Here are some options of where
to get a mycoplasma test …
Melbourne Forensic & Diagnostic Services
From early 2000 the mycoplasma DNA detection test (AU$78) will provide a
DNA detection screen and, if positive, another serological and DNA test
for M. fermentans). MDFS confirm they use a different method and look
for DNA in a different part of the blood from Nicolson/IMD (see below).
372-376 Albert St
East Melbourne
VIC 3002
AUSTRALIA
Ph (03) 9415-1833, fax (03) 9416-5309
Our Group’s library has copies of info from the MFDS web-site, including
map, an 18-page article on mycoplasma testing, price list and lab
instructions for your GP.
Australian Biologics
This lab was mentioned on the Ozme list:
Suite 401, BMA House
135 Macquarie St
Sydney
NSW 2000
AUSTRALIA
Ph (02) 9247-5322, fax (02) 9247-5453
Garth Nicolson/ International Molecular Diagnostics Inc (IMD)
The mycoplasma DNA detection test costs US$150, and if positive, the PCR
panel test for the 4 sub-species costs US$250 (apparently cheaper than
other US labs which charge up to US$600.00). IMD is an unincorporated
Non-profit Organisation:
15162 Triton Lane
Huntington Beach
California CA92649-1041
USA
Ph (714) 799-7177, fax (714) 799-9787
Web site
Other web sites with information about tests and mycoplasma are:
Filed under: Newsletters
August 10, 2004 • 2:38 pm Comments Off
MPs’ Support Group
May 15 2002
Alliance MP Phillida Bunkle announced in a speach to Parliament today that a group of around 20 MPs, including deputy Prime Minister Jim Anderton, have come together in a support group with the aims of recognition, and support for a complaint that may affect 16,000 New Zealanders as a disease.
Ms Bunkle wants myalgic encephalomyelitis (ME), known as chronic fatigue syndrome, recognised as an official condition.
She presented a report today by Britain’s chief medical officer of health, that showed ME was a common complaint.
“The report is a milestone for people suffering from ME, because it recognises that ME is a legitimate physical condition, which needs to be adequately dealt with in both policy and provision,” Ms Bunkle said.
The report said as many as 250,000 Britons were affected. If similar incidence rates occurred here, almost 16,000 New Zealanders would suffer from the condition.
The 20 MPs who had pledged support for a policy change on ME, included Mr Anderton, Minister for Disabilities Ruth Dyson, Labour MPs Matt Robson and Judith Tizard, and Green Party MP Sue Kedgley.
Ms Bunkle said New Zealand should follow the example of 150 British MPs who had committed to changing policy on the condition.
The report said ME caused immune, endocrine, musculoskeletal and neurological abnormalities, even though it did not have specific disease markers.
Those with a severe case of ME were unable to carry out normal daily tasks and spent the majority of their time in bed.
The UK Chief Medical Officer’s Report On ME/CFS
Action For ME in the UK have provided links to The Chief Medical Officer’s Working Group Report On CFS/ME mentioned by Phillida Bunkle. This report is important to all who suffer from CFS because it accepts CFS has an illness – no longer, in the UK, can GPs claim that “There is no such thing as CFS”.
The report is available in PDF format.
To read the report you need Adobe Acrobat.
A full copy of the report is available from the UK Department Of Health
Filed under: Newsletters
August 10, 2004 • 2:23 pm 1
MPs' Support Group Members
The Members of the MP Support Group as at May 15 2002 are:
- Hon Jim Anderton
- Tim Barnett
- Georgina Beyer
- Sue Bradford
- Phillida Bunkle – Not elected 16/8/02
- Kevin Campbell – Not elected 16/8/02
- Hon Chris Carter
- Steve Chadwick
- Helen Duncan
- Hon Harry Duynhoven
- Hon Ruth Dyson
- Jeanette Fitzsimons
- Grant Gillon – Not elected 16/8/02
- Liz Gordon – Not elected 16/8/02
- Joe Hawke – Not elected 16/8/02
- Rt Hon Jonathan Hunt
- Sue Kedgley
- Judy Keall – Not elected 16/8/02
- Winnie Laban
- Hon Sandra Lee – Not elected 16/8/02
- Nanaia Mahuta
- Jill Pettis
- Matt Robson
- Hon Dover Samuels
- Hon Judtih Tizard
We encourage all New Zealanders who suffer from CFS/ME, or caregivers, to write to these MPs thanking them for their support. The mail address is
Parliament Buildings, Wellington.
You do not need a stamp
The email address is firstname.surname@parliament.govt.nz
Filed under: Newsletters
