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I have just published "Self-Analysis Exercises for ME"
**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).
**The Times Online**
recognises ME/CFS as a neurological illness in line with the USA Center for Disease Control and Harvard University Campaign, November 2006 (see
U Tube site
for Center for Disease Control's recent video).
**Official Sleepydust Video**
This professional short video expresses the inner story of ME/CFS with helpful advice for carers, friends and relatives. Highly recommended.
Click here for a summary
Dr Paul Cheney's
theory about CFS/ME, with practical tips on applying treatments in line with his hypothesis.
Evidence that Cognitive Behavioural Therapy does not work in ME/CFS:
"Celebrity Health", the BBC News website talks to author Shirley Conran, OBE, about her ME/CFS - see
In this BBC article about ME, sufferer Shirley Conran, author of bestselling book "Superwoman" (full of good tips on how to save energy in the home) claims that Cognitive Behavioural Therapy (CBT) is helpful to her. But it is quite clear, from what Shirley says, that CBT has made no difference whatsover to the overall condition of her ME/CFS. ME patients are not always able to discern their physical state (see our Homepage about articles they unwisely write about "How I recovered from ME" while still confined to bed). CBT and the psychiatric approach behind this BBC article seems like media "propaganda". Shirley Conran, sadly, spends 3 months a year in a dark room, having had ME/CFS for 35 years. This demonstrates no recovery (it is more like a relapse). She mentions having problems with foods. Has she, in the last 35 years, tried the allergy treatment/anti-candida/high raw diet recommended on this site? If she had, would she allow herself to be used to commend CBT? We note that one psychiatrist gave her some reasonable advice in 1971, long before ME/CFS was by "annexed" UK psychiatrists (without any consultation with ME patients or their representatives).
he willingness of celebrities to inadvertently promote approaches harmful to children and the most vulnerable with ME is surprising (although Clare Francis was an ME campaigner and helped start the first "ME Action" and Shirley Conran has supported "The Tymes Trust"). Others get publicity for their careers/books/films through having ME - but surely not by compromising in public with the "psychiatric approach"? David Puttnam (Lord Puttnam, film director of "Chariots of Fire") "commends" the psychiatric line too and is no better from ME, himself. Can "celebrity MEs" possibly start a fund-raising campaign for serious research into the
causes of ME
for news on food allergy treatment - cure in 10 years -
or is this just hype?
A Statement of the House of Commons supported by eight MPs on the 15th of May, 2006.
"This House congratulates the charity Action for ME on a successful Myalgic Encephalomyelitis/Encephalopathy (ME) Awareness Week, which this year ran from 8th to 14th May; notes that there are 240,000 people in the UK with ME, and that a recent survey by Action for ME has estimated that 55,000 of these people are so severely affected by the illness that they are either bed-bound or house-bound; is concerned that the survey also suggests that 77 per cent. of the total 240,000 people in the UK with ME have lost their jobs because of the illness, with a cost to the nation of £6.4 billion a year; believes that there needs to be greater understanding of the illness if it is to be properly combated; and congratulates Action for ME on all the positive work they have done to raise awareness about this illness and to increase funding for research".
You can post your dietary, spiritual/religious questions and responses to this site on our ME/CFS
. You are free to add comments without signing in, but we recommend signing in, in order to be a more regular contributor. Please use the
site for all discussions about medical approaches/treatments/ drugs etc. The disclaimer at the bottom of our homepage also applies to all posts on my Forum.
Disability campaigners have called on the government to plough greater resources into finding a treatment for ME, following claims of misdiagnosis and mistreatment by the NHS.
The 25% ME Group, which represents people with the most severe forms of the condition, accused the government of "wasting millions on inappropriate treatment" by using psychological therapies such as cognitive behavioural therapy to help treat patients with ME. The group said: "The government has chosen to pour many millions of pounds worth of public money into funding psychologically-based treatments and management strategy therapies, which simply do not work for ME patients and indeed can cause more harm to ME sufferers." The national support group claims 95 per cent of its members who had tried such therapies reported a worsening of their symptoms. Instead, it is calling for the government to redirect resources into researching the physical causes of the illness, which they say is currently being funded through private donations. Action for ME, another ME charity, said psychological therapies can help "as a coping strategy to manage the illness", but reinforced calls for "fully funded biomedical research".
A spokeswoman for the Department of Health
said: "It is for clinicians to decide how best to treat their patients." She said the government had invested £8.5million in Chronic Fatigue Sydrome/ME services via the Medical Research Council (MRC). The MRC said it would fund proposals which had an "alternative approach" but that nothing of sufficient quality had yet been proposed. [
Priya Kotecha, June 2006
Alison Bailey's response on the Chief Medical Officer's Report and to the article on the "Christian Medical Fellowship" website about ME/Chronic Fatigue Syndrome relating to the Chief Medical Officer's Working Group on ME/CFS
. The disappointing comments by Dr Peter May are on ME/Chronic Fatigue Syndome (of which she was a member) are still posted on the website of the Christian Medical Fellowship. To read on,
please click here
Link to original article:
Article (15 May 2006) The Daily Telegraph on ME.
An article in
(15 May 2006) by Barbara Lantin is better researched and fairer than previously broadsheet articles, which have clearly been vehicles for psychiatric theories. It reports that ground breaking research by Dr Jonathan Kerr at London University into the genetic failure of 100 genes in the immune systems of people with ME has, extraordinarily, been turned down for official funding. The claim that Cognitive Behavioural Therapy aids healing and this shows up on on brain scans depends on the selection of patients for the tests (the term "CFS" covers people with psychiatric conditions).
**Alison Bailey's Report from ME Awareness Week:** Static Demonstration Whitehall May 12th 2006
Professor can der Meer
** finds that the grey matter in the brains of people in ME is the same size as that of someone 15 years older. Most interesting is his finding that people with ME react more than controls to normal stimuli. "They sense more fatigue and more pain". This is at the level of neurology. Apparently, the neurotransmitters of people with ME are giving signals that are too strong, something which is visible on MRI scans. Does this explain why people with ME cannot cope with open plan offices, loud noises, light and too much excitement and need a gentler, quieter, contained life to recover?
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