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Alison Bailey Castellina's Profile
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This website is regularly updated by
Alison Bailey Castellina
ME/CFS "expert patient" for 15 years, ME recoverer and campaigner, member of the UK's Chief Medical Officer's Working Group on Chronic Fatigue Syndrome, co-founder of "Young ME" now "The Tymes Trust" and co-founder of UK patient support groups with
See also my own Blog on different subjects at:
See side panel for various links on managing ME. Recent news from Alison who uses "ME management" techniques to live a normal life.
Some ideas for a
wheat free Christmas Menu
for someone unable to eat Christmas pudding or cake
A recent paper on ME
(added July 2012)
A key element of ME recovery is working very hard to strengthen your immune system. I would recommend getting
"100 ways to boost your immune system"
a tiny, easy to read book as well as advice on this website. See it
proves that being in the countryside and nature lowers stress levels. Being surrounded by strangers in an urban environment can cause hyper-alert and high stress states. Even 5 mins in the countryside has an effect. I note this as our commuter trains reaches open country. I see people around visibly relax - within seconds. The verdict is: being in the countryside is healing (and v helpful in ME).
This video presentation on how to help someone with ME from
is very useful for the family of those with ME. See
I was once informed (either correctly or not) that composer John Rutter who wrote "This is the Day" for the Royal Wedding had ME, and recovered.His music after "ME", particularly his profound "Requiem", had a major role in my mental healing from ME. His music is full of divine comfort. Listen to "This is the Day"
I have just published "Self-Analysis Exercises for ME"
.Their purpose is to help ME patients to reduce stress from half-conscious sources. Your feedback is welcome.
**Ten Medical Tests for ME**
- to give to your GP or for a medical examiner for employment purposes
(available for sale) a modernised version of
"Sickness: Its Trials and Blessings"
which speaks directly to the situation of people with ME/CFS.
Read it free online at this link
for key messages from Priscilla Maurice on how to view chronic illness
Joni Eareckson's website
and blog for daily Christian teaching on suffering (see Joni's Corner and her blog)
Quote from Minister for Health, Paul Burstow, 2 Feb in House of Commons UK: "I hope that the
can play an important role in that. Nationally and regionally, it has support networks that can make a huge difference by levering change in the commissioning of neurological services.
I urge groups with an interest in CFS/ME to engage with the Neurological Alliance, use it, work through it and form connections with it, as a way of shaping and changing services in the future"
(see link below for full text)
for a transcript of the House of Commons debate (UK Parliament) on 2 February 2011 about ME/CFS
for expert advice on a) strict pacing and b) why one gets delayed reactions in ME from Australian ME/CFS magazine "Emerge" (added Jan 2011)
UK bans ME sufferers from giving blood. See
- new laws from 1 October 2010 in the UK ensure that people being recruited by employers are under no obligation to state that they have had ME or any other disability. Legal cases can also be taken on two grounds of discrimination e.g. age and disability. This should take some pressure off those with ME. Once formally appointed, then one can request under the Disability Discrimination Act, for reasonable adjustments. One word of warning: employers tend to wind most cases on disability but if a case is proved, compensation can be high. ME is "hidden", so cases might be stressful and difficult. One also has the "legal right" for readjusted working hours.
As a result of US research on ME see
the National Health Service in England, dominated by psychiatric theories, has nevertheless banned ME patients from donating blood (from 1 November 2010).
Research study shows virus found in young ME patients. See
. I founded "Young ME" (The Young MEs = "The Tymes Trust") in 1988 so I am really pleased to see that they funded this research at Dundee University. This study demonstrates evidence of "persistent inflammation" which seems to be symptomatic of a deregulated immune system which I explain on this website.
Do you brush your teeth
(not once) a day?
They have proved a link between heart disease and immunity and poor mouth hygiene. It is pretty clear that brushing twice a day supports the immune system (which is weak in ME) and would help it recover strength.
People with ME have to be careful with jabs. In face of swine flu, I would take raw garlic. I have read that during swine flu, its price in China soared - as the Chinese discovered it worked.
for our website on an expert on chronic illness, Priscilla Maurice. The side link "My encounter with Priscilla" is the text of my recent talk to UK National Health Service chaplains on the topic of long term illness.
for key messages from Priscilla Maurice on how to view chronic illness
Advice about handling stress better
For ready prepared daily readings from the Bible simply
click here each day
(you could even listen to them as they are read out)
Warning on exercise and weight training
A number of American men, including professional athletes, executives and doctors, have contacted me through this website and are still exercising e.g. doing weight-training with ME/CFS. It seems that the "fitness and slimness culture" in the USA and CFS clash, with very negative consequences for CFS patients. If a ME/CFS patient goes on exercising, especially weight-training, after contracting CFS, he/she is not only making CFS into a chronic condition but making it
worse, with less chance of full recovery, than if exercise is avoided. For athletes, the long term prospects for going back to professional athletics are minimal. Gentle exercise after
recovery to the level of full-time work
should be limited to very gentle swimming and gentle hill-walking at the most (with Nordic walking poles).We heard of one CFS patient who thought she was healed (at a Pentecostal meeting) being paralysed after going skiiing; another person who had been apparently fit for years after CFS, relapsed into a wheelchair, after one game of tennis; another friend,
, is in a wheelchair, after pushing her leg muscles, in severe ME, going uphill and an elderly ME/CFS friend of ours died immediately after doing some gardening, having been confined to bed for years.
Avoid cycling and running
: one person in California with had controlled AIDS (which is severe "immune compromise" like CFS) died after one bike ride. This is very bad news for the young and athletic but the only advice we can in good conscience give. Walking steadily, with or without Nordic Walking Poles, on the flat, should be good enough to keep muscles in shape, if very carefully judged, with regular mini-rests. Gentle stretching lying flat, seems to be alright, if not any strain on muscle power.
any lifting of
type of weight. climbing flights of stairs, pushing muscles to tone them, carrying furniture, pushing muscles generally.
Email me for more specific advice.
- Using a strict diet/allergy approach to ME/CFS, I got myself back to full-time work over 8-10 years, becoming "fitter", physically, emotionally and spiritually. ME/CFS can be self-managed through discipline and a careful dietary regime. Some patients manage the symptoms so well that they can eradicate them. The information on our site, in the absence of informed medical advice, is offered free. There are hundreds of thousands of vulnerable, excluded CFS/ME patients, across the globe, surviving on a very low income. Exclusion and poverty, like social isolation and emotional disturbance, are
symptom in ME/CFS. We dedicate this site to them and to finding solutions to this devastating disease.
If you already know you have ME/CFS, reading this site could help you manage at least one of your ME/CFS problems. Controlling even one symptom, would improve your quality of life. It could seriously improve your chances of regaining some, if not all, of the quality of life. Following the whole regime on this site will have results possibly more quickly than in my own case. I did not
and I could not eat organically. I am advocating approaches that, privately, many politicians and genuine doctors
with, but cannot say in public (politicians handle budgets and doctors recommend only drugs). It is the opinion of many ME patients that no "wonder drug" will work for this syndrome once it has developed (though new genetic reesarch is offering some insights which may prove useful). Medicine is not very good with chronic conditions. So far, the situation for those with full blown ME/CFS has not changed for 50 years. It is unlikely that much will change, for years to come
The question is this. How much do you want to get better and
what will you do, read or eat to achieve that
? No "pain", no gain is 100% true in ME/CFS. Those of us who have worked very hard towards recovery admit that.
There is a lot of "holistic" ME/CFS advice (mind, body, spirit) on this site, so please read it slowly. It is set up by me as a UK
support group leader, a Member of the UK Chief Medical Officer's Working Group, ME/CFS counsellor and ME recoverer. It looks from various angles at a disease which confounds modern medical science, 21st century philosophies, psychiatry and even the vast resources of the human mind. What last bastion is there for those suffering with ME/CFS? For some, finding answers to questions like
"Does faith operate in ME/CFS?
What is the purpose of suffering?"
is fundamental to rehabilitation. The site shares fellow patients' experiences of ME, their insights, practical tips and words of comfort with patients of all beliefs (and has certain sections which are specifically Christian). It discusses the effects in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome of a high raw
organic fruit and vegetable
diet which heals intestinal toxicity (central to ME/CFS)
than probiotics, a wheat-free diet, the medicinal use of garlic to kill candida/yeast infection, music therapy, food allergy treatment and assertiveness awareness to tackle the low self-esteem produced by a hidden disability. It offers insights into the work of US CFS doctor, Paul Cheney. It raises issues of abuse/rights in ME/CFS, survival in the workplace with ME, disability mentoring, restoring self-confidence, faith and "meaning" in chronic illness, obstacles to travel, easy recipes and so on. There are also suggestions on what causes ME/CFS. This advice is offered completely free of charge, since many ME/CFS patients are in severe financial difficulties".
The author, Alison Bailey
is the founder of "Young ME", which developed through the work of young M E suffererers. She works full time on global warming issues and advises on disability issues in the workplace. She regards herself as almost fully recovered from ME/CFS after 20 years. She was a national ME support leader and a member of the UK Chief Medical Officer's Working Group on ME/CFS (a "patient expert" - see News Update for her views on this). She is one of the leading workplace champions for people with Myalgic Encephalomyelitis, known as M.E. (ME) in the UK and "Fibromyalgia" and "Chronic Fatigue Syndrome" (CFS, FM or FM-CFS) in the U.S. She has counselled hundreds of patients with ME since 1986 when she herself contracted ME. She has 20 years' experience of a wide range of ME sufferers and of treating ME, in herself, using a range of techniques, including pacing, allergy treatment and a high raw diet. Alison has accumulated a fund of knowledge of almost every complexity of ME/CFS. This ME website sharesthat knowledge in the hope that some ME/CFS sufferers will listen carefully and try these approaches
. These approaches are an attempt to "
think outside the box
" in the light of current psychological and medical approaches which are failing or, some claim, even
This site is not financially supported by any government, interest or charitable body. It can be updated immediately (unlike many ME/CFS sites). The views expressed are entirely the author's and her associates, not those of
section of the media, government, scientific or medical profession, commercial interest, charity or political interest group. It is self-funded, with technical support from a webmaster. All ME/CFSadvice is offered free of charge. If you would like to make a donation online, this would go towards the running costs, but donations are entirely voluntary.
Medical and Legal Disclaimer:
Please note that the author and her affiiliates are not responsible for negative effects in particular cases from medical advice set out on this site. Sufferers attempt these remedies entirely at their own risk even though no ill effects have been experienced by the author or others in tryingthem. Particular caution should be used when testing new chemicals and foods in ME/CFS, which might cause some kind of reaction, even an acute allergic reaction. Medical advice should be sought if the sufferer is in any doubt about whether he/she should use any of the treatments set out on this site or those this site links to,//
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