“To have to go to court to get these things is just ridiculous.”

Findlay, age 16, and his mother, Jane Waters

This story is about a mother who is being forced to go to court to get a tutor for her son, who contracted ME/CFS in 2011 after a viral illness. 

For those who are not familiar with the UK system, The General Certificate of Secondary Education (GCSE) is an academic qualifying exam given for specific subjects (somewhat like the SATs in the US). Without tutoring it is unlikely that Findlay Waters will be able to attend college.

My own experience mirrors that of Jane Waters. In the US, the Americans With Disabilities Act is supposed to provide tutoring for any child suffering from a disability or ailment that prevents him or her from attending school. But when my daughter contracted ME/CFS in 1992, her school resisted providing tutoring for her on the grounds that she did not have a "real disease."

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Mum facing council at tribunal over son's education at St Ivo School

By Eleanor Dickinson for Cambridge News, December 4, 2013

A desperate mother has launched a fight for her sick son’s chance to have an education after his illness forced him to leave school two years ago.

Jane Waters, from Arrington, has been at loggerheads with Cambridgeshire County Council since 2011, when her son Findlay found himself unable to attend St Ivo School, St Ives, due to severe chronic fatigue syndrome (CFS).

Mrs Waters and her husband Richard are facing the council at a tribunal today (Wednesday, December 4).

The 59-year-old said: “The council has failed our son. His illness means he cannot attend school and he desperately needs a tutor to come teach him and a computer with the right software so he can use distance learning to get the education he needs.

“To have to go to court to get these things is just ridiculous.”

Findlay, 16, began suffering from CFS in September 2011 after the whole family was struck down by a virus during the summer holidays.

Finding himself crippled with extreme fatigue, sickness and mental confusion, Findlay was forced to drop out school completely by January 2012, despite his best efforts to keep attending. Now more than two years later, the once active teenager finds himself mostly confined to his bed and without any GCSEs.

His mother said: “He is a very bright and intelligent boy. Before he became ill, he struggled with dyslexia and dyspraxia, and yet achieved a grade 8 in his maths in his Year 9 exams and was set to do 10 GCSEs.

“He really wants to study maths and physics at Cambridge University. But since his illness he has had no tuition in either of those subjects and has only been given 35 hours of tuition in English.”

Mr and Mrs Waters were facing County Council representatives at a Special Educational Needs and Disability tribunal in Cambridge yesterday in the hope of gaining a maths and physics tutor and the rights computer equipment so Findlay can get back on the educational tracks.

A spokesman for Cambridgeshire County Council said: “The council has offered appropriate tuition and continues to engage with the family to find the best way to meet their son’s needs.

“A parental appeal is being made to HM Court first tier tribunal and as such it would not be right for us to comment further.”

St Ivo School declined to comment.

The UK Rituximab Trial for ME

B-cell Targeted by Rituximab

Source: MEActionUK, August 2, 2013

By Professor Malcolm Hooper and Margaret Williams

The charity Invest in ME has provided a truly remarkable opportunity to address one of the biggest medical scandals in history and to remove what in 2007 Alex Fergusson, Presiding Officer (Speaker) of the Scottish Parliament, referred to as "the cold grip of psychiatry" on myalgic encephalomyelitis (ME), which he said was "still far too deeply rooted in the world of ME"

Now, however, despite the power and control of the psychiatric lobby, thanks to Invest in ME and the invaluable support of Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College, London, (world-renowned for his work in B cell immunology and as lead researcher in the clinical trials of rituximab for rheumatoid arthritis), the neuro-immune disease ME is at last about to enter the realm of mainstream medicine in the UK under the guidance of Professor Edwards himself.

Invest in ME are at the forefront of international biomedical research and have by sheer determination and effort managed to put things in place for a trial of rituximab to begin on ME patients in the UK.

They recognise the urgency of the situation and know that many ME patients do not have the luxury of time.

The charity already has the facilities in place, including suitably experienced researchers (Professor Jo Cambridge is now principal researcher at UCL, and the ME trial will involve the same team working under her that carried out the rituximab research in RA).

The Clinical Trials Unit at UCL is already working on the protocol, and Invest in ME have agreed with Professor Edwards that the protocol will be externally reviewed even though the UCL team will make sure it is cast-iron by their own internal reviewers.

Invest in ME have been told this trial could start relatively quickly if the charity had funds available.

Such an opportunity must not be lost. However, this will not happen without substantial funding.

We therefore ask everyone who is able to do so to donate whatever they can afford, in order that the UK rituximab trial can get under way as quickly as possible whilst the excellent facilities and committed staff at UCL and the active support of Professor Edwards remain available, so that ME can finally be recognised as the devastating multi-system neuro-immune disease that it is and - most importantly -- so that sufferers may at last have some hope of alleviation of their suffering.

Invest in ME have assured us that all donations to the rituximab fund will sit in a separate account which is totally ring-fenced, and should the trial not proceed, the following statement on the IiME website will be honoured:

What Happens With These Funds If The Project Does Not Go Ahead:

If the rituximab project does not go ahead for some reason then the funds raised will be transferred to the IiME Biomedical Research Fund to fund other biomedical research projects which are attached to our proposal for an examination and research facility based in Norwich Research park in Norfolk, UK.

These funds will only be used for biomedical research into ME.

Invest in ME: http://bit.ly/18TZN5d

A UK trial of rituximab is essential to move ME out of the realm of psychiatric dogma and into the realm of medical reality.

Information on how to donate can be found on the Invest in ME website: www.investinme.org

UK ME/CFS Biobank project awarded £1 million grant

Press Release: LSHTM Communications Team, June 28, 2013

A pioneering biobank project aimed at the study of Myalgic Encephalomyelitis (ME) / chronic fatigue syndrome (CFS) has been awarded a grant totalling £1,029,411 ($1,588,225) over three years by the US National Institutes of Health (NIH).

A biobank is a large collection of biological samples including tissues such as blood, which provides a valuable database for scientific research. Patients with an illness, as well as healthy people (controls), volunteer their tissues for inclusion, and each sample can be linked with detailed clinical information about the donor.

The UK ME/CFS Biobank was launched in 2011. It is the only one in the UK and the first in Europe aimed at the study of the illness. The project is led by the London School of Hygiene & Tropical Medicine and is currently funded by the ME Association, Action for ME, ME Research UK and a private donor.

Samples for the ME/CFS Biobank are obtained via NHS primary care networks and other sources, and are then processed and securely stored at the University College London/Royal Free Hospital Biobank.

During phase one of the project, researchers successfully banked samples from over 100 clinically assessed ME/CFS patients and controls, along with key clinical information about the donors, which has been anonymised to maintain patient confidentiality.

The grant from the NIH will enable important research on the immunology and genetics of ME/CFS, which may lead to the discovery of much needed disease biomarkers. It will also help to expand the Biobank to store samples from over 500 participants, including almost 300 patients and over 200 controls (comprising healthy controls and people with multiple sclerosis), which will be made available to medical researchers internationally.

Dr Eliana Lacerda from the London School of Hygiene & Tropical Medicine, one of the lead researchers on the project, said: “At least one in every 500 adults in the UK is affected by ME/CFS at any one time, as well as a smaller but significant proportion of children. The NIH grant provides a huge boost to the Biobank, which will enable more research into the causes of ME/CFS and ultimately help those affected.”

Erinna Bowman, one of the project researchers, said: “A key component of our project is its longitudinal design, which includes participant follow-ups over an extended period of time. This longitudinal aspect makes the Biobank an even more valuable resource and presents new opportunities for scientific discovery in the years to come.”

The London School of Hygiene & Tropical Medicine is home to a dedicated research group working on research into ME/CFS.