Tuesday, 30 November 2010

Allergies and Multiple Chemical Sensitivity in ME/CFS

http://www.meactionuk.org.uk/Allergies-and-MCS-in-ME-CFS.htm

http://www.meactionuk.org.uk/Allergies-and-MCS-in-ME-CFS.pdf

Allergies and Multiple Chemical Sensitivity in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Margaret Williams
29 November 2010

I would recommend the above article by Margaret Williams. Many of us with ME have multiple allergies and sensitivities to various foods and chemicals, so the article will hopefully be of help to some.

Links to further articles by Margaret Williams, who is herself badly affected by ME, can be found on my website at -

http://www.oneagleswings.me.uk/medicalarticles.html


Monday, 22 November 2010

‘None of my patients have ever been harmed and none have ever made a complaint about me’

Dr Sarah Myhill is well-known in ME circles, so I thought that the following article might be of interest; unfortunately Dr Myhill is not the first doctor to have such problems -

http://www.walesonline.co.uk/news/wales-news/2010/11/21/none-of-my-patients-have-ever-been-harmed-and-none-have-ever-made-a-complaint-about-me-91466-27685765/

‘None of my patients have ever been harmed and none have ever made a complaint about me’

Nov 21 2010 by Daniel Fisher, Wales On Sunday

A DOCTOR banned from practising medicine and branded a “real risk to patients” has spoken for the first time of her battle to clear her name.

Dr Sarah Myhill, 52, who specialises in the treatment of ME and chronic fatigue, has been banned from practising medicine for 12 months pending a full investigation by the General Medical Council (GMC).

Dr Myhill, who runs a private practice in Llangunllo, Powys, has claimed to “pioneer” treatments combining conventional medicine with herbal and homoeopathic techniques.

But the GMC is investigating allegations made by other GPs about her management of a patient with a neurological disease and another complaint about the contents of her website – which among other things advised against women taking the oral contraceptive pill.

In an exclusive interview with Wales on Sunday, Dr Myhill has revealed:

- She intends to fight the GMC all the way to the European Court of Human Rights if she has to;

- she can’t afford to hire professional lawyers to prepare her case;

- the battle to clear her name has “engulfed” her life and “emasculated” her professionally;

- that she has been overwhelmed by the kindness and support she has received from her patients.

Dr Myhill’s battles with the GMC began in 2001 following a series of complaints from other doctors. Those allegations were dropped in 2007 with no case to answer. But further complaints emerged, firstly from a group of doctors concerned that she recommended a B12 injection to a patient.

A second came from an anonymous complainant who alleged the information on her website was “very worrying” and was concerned “patients are being seriously misled”.

On the basis of those allegations, in April this year a GMC panel imposed a series of conditions on Dr Myhill’s registration, banning her from prescribing prescription medicines and ordering her to remove large sections of her website.

The decision was upheld in a further hearing last month, in which GMC panel chairman Dr Peter Maguire said: “There may be impairment of your fitness to practise which may pose a real risk to patients and as a result, to members of the public.”

But in response, thousands of Dr Myhill’s supporters and former patients have spoken out against the GMC’s “witch hunt” and called for her to be reinstated.

More than 4,000 patients and supporters have signed a petition and more than 1,000 have written letters directly to the GMC.

Speaking at her Powys surgery, Dr Myhill said: “The main allegation is from an anonymous e-mail but the GMC has received more than 1,000 letters from my patients supporting me.

“It feels as if they are ignoring the evidence that doesn’t suit their case.

“The GMC have not made any specific allegations about me. They only talk about my ‘potential’ risk to patients without saying what that risk is. I point out to them that by that measure any doctor in any surgery is a ‘potential’ risk.”

Dr Myhill said she was determined not to give up the fight which had engulfed her life for more than nine years.

“I have been completely emasculated professionally,” she said.“I can’t work as a doctor which means I can’t afford representation.

“So between me and the GMC – who have all their barristers and lawyers at their disposal – it just isn’t a level playing field. The next step is the High Court, where I will argue that they have not explained the specific allegations and have therefore breached my human rights. I have been punished with no proper trial. The fact is that none of my patients have ever been harmed and none of my patients have ever made a complaint about me.”

While her professional career hangs in the balance however, Dr Myhill said she was determined not to let the issue become too personal.

“Of course it does take its toll on you emotionally,” she said. “I would much rather be seeing my patients, horse riding and generally getting on with things rather than spend 24/7 immersed in my case. But I have to do that to give myself the best possible chance. I am not letting it become too personal. I am keeping cool, calm and professional.”

She said she was now keeping afloat by dipping into her savings and by working as a nutritional therapist.

“I will survive and get by but it is my patients who are the ones who will suffer,” she said. “I can’t give them the service I would like to give them. The GMC won’t listen to them – it’s like their opinions count for nothing. For many of my patients, when they come to me they have done so because they have reached the end of the road. They have no-one else to go to.

“It meant once I was banned I was unable to refer them on to anyone else. The patients are the forgotten victims in all of this. They could not be more supportive or generous to me. Some have even sent me money for the fighting fund, which I will use towards a barrister for the court appearances.”

The next step is a High Court
hearing next month after which she has said she would take her case all the way to the European Court of Human Rights.



Thursday, 18 November 2010

MSG Sources Brochure

The "Truth in Labeling" campaign (http://www.truthinlabeling.org/) has produced a new brochure giving details of the numerous hidden sources of Monosodium Glutamate (MSG) - a must for anyone sensitive to MSG. To download the brochure, click on -

http://www.truthinlabeling.org/SourcesBrochure.pdf

Monday, 15 November 2010

UK 'CFS/ME' PACE Trial Complaint Update

Professor Malcolm Hooper has received a letter dated 8 November 2010 from the Minister with responsibility for the MRC, The Rt Hon David Willetts MP.

He notes that the MRC is "thoroughly" investigating the complaint that was set out in "Magical Medicine: how to make a disease disappear" and awaits the promised response with interest" -

Dear Doctor Hooper,

Thank you for your letter of 7 October to the Secretary of State, regarding your complaint about the Medical Research Council (MRC) funded PACE trial on CFS/ME. I am replying as this matter falls within my portfolio and apologise for the delay in doing so.

I do recognise that CFS/ME can be an extremely debilitating illness and cause much distress to sufferers and their carers. The MRC, as one of the Government's main funding agencies for biomedical research, also recognises this and welcomes high quality applications for research into CFS/ME including evaluations of treatments, and studies into the biological basis of the condition.

You have taken the correct course of action in raising your concerns with the MRC; the council has assured me that it takes allegations of coercion within a trial very seriously and is investigating your complaint thoroughly. I have been assured that you will receive a response from the MRC within the next month.

Yours sincerely,

The Rt Hon David Willetts MP

A copy of the letter from David Willets to Professor Hooper is available for download as a pdf at:
http://www.angliameaction.org.uk/docs/willets-hooper-pace.pdf

If you haven't read "Magical Medicine: How to make a disease disappear", it can be found at:
http://www.meactionuk.org.uk/magical-medicine.pdf

For further information, see also:
http://www.meactionuk.org.uk/magical-medicine.htm

Friday, 5 November 2010

My hope is built on nothing less

Another favourite hymn:

My hope is built on nothing less
Than Jesus' blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus' name.

On Christ, the solid rock, I stand;
All other ground is sinking sand.

When darkness seems to veil His face,
I rest on His unchanging grace;
In every high and stormy gale
My anchor holds within the veil.

His oath, His covenant, and blood
Support me in the 'whelming flood:

When all around my soul gives way,
He then is all my hope and stay.

When I shall launch in worlds unseen
O may I then be found in Him,
Clothed in His righteousness alone,
Faultless to stand before His throne.

Edward Mote, 1797 - 1874




Tuesday, 2 November 2010

November 1st Demo

http://www.demotix.com/news/494700/uk-me-sufferers-banned-donating-blood

ME sufferers staged a protest outside the Department of Health in Whitehall on the first day that their blood was banned from being used in blood transfusions. ME patients are banned from donating blood from 1st Nov 2010. According to NHS Blood and Transplant it is “as a precaution to protect the donor’s safety by ensuring their condition is not made worse by donating blood”.

The ME patients I spoke to believe that it is not to protect the donor but the recipient of their blood.

This would raise an interesting question: ME sufferers are told by the medical profession that the cause of Myalgic Encephalomyelitis is psychological and not physiological. Then why is the safe use of their blood now in doubt? This suggests that ME is caused by something in the blood, perhaps something like XMRV.

XMRV, short for Xenotropic Murine Leukaemia Virus, a retrovirus, discovered in 2006, is an infectious retrovirus of the same family as HIV.

In the USA, researchers discovered in 2009 that there was a strong link between ME/CFS and XMRV (cited by Lombardi/Ruscetti in Science) and later in 2010 Murine Leukaemia viruses were also found in ME patients as shown in the PNAS publication of the Alter/Lo Study.

The UK is not unique in taking the step to ban blood from being taken from ME patients, other countries have also done so, but at least in Canada, Australia, New Zealand and the USA, it has been admitted that they have imposed the ban to protect the public from the potential risk of infection from the newly discovered virus XMRV.

At the moment, there are 250,000 ME patients in the UK and 2.7 million worldwide. There is no cure or effective treatment.

Photographs by Mario Mitsis