Our vision is to improve the quality of life of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients.
How do we do this?
The experience of having the disease is bad enough but patients also have to deal with poor ‘treatment’ and support from those who have a duty of care over them.
We are improving the quality of life of patients by educating the professionals who have a duty of care over them. This is slow, relentlessly tough work but we are doing it.
The human rights abuses of M.E/C.F.S patients links to our educational work. We believe many of these abuses would not happen if the knowledgebase was improved.
During 2021, we set about tackling the human rights abuses of patients by asking a range of groups and organisations to investigate these abuses. We officially contacted the World Health Organisation, the United Nations (Retha Viviers, Founder of M.E/C.F.S Foundation South Africa co-signed the WHO and UN letters) and the UK Joint Committee for Human Rights in September 2021 asking them to address and /or investigate our concerns. These three organisations were sent variations of the letter below-
Here is the email, sent to the Joint Committee on Human Rights.
We are writing to express our concern about the ongoing human rights abuses of the UK Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E/C.F.S) community of patients and their families by medical professionals and their establishments.
This community is growing exponentially as a result of Covid19, many Long Covid patients are now being diagnosed with M.E/C.F.S, and the patient experience is worsening in terms of discrimination and legal obligations being ignored. This is particularly the case in the United Kingdom, however the ripple effects are being felt worldwide.
As António Guterres, United Nations Secretary-General wrote in ‘The highest aspiration: A call to action for human rights’ –
‘Disregard for human rights is widespread. In many situations around the world, we see egregious and systematic human rights violations; rampant impunity; rising hate speech, misogyny, exclusion and discrimination; social polarization and loss of civility, environmental degradation, and unequal access to resources and opportunity. We also see the human rights agenda being instrumentalized for political purposes.’
As far as we are aware, the Human Rights Join Select Committee has yet to look into the human rights abuses of this patient community despite well over 250,000 people having the disease in the UK (10 years’ old statistic) and this abuse being widespread.
We believe these human rights abuses contain many factors including, but not limited to –
- The scientific consensus on M.E/C.F.S is being ignored by medical establishments in the UK and elsewhere around the world.
- Both Graded Exercise Therapy and Cognitive Behavioural Therapy are as a result of the PACE trial. This research study has been widely discredited by international scientists and researchers as ‘poor research’ and the trial has been called ‘one of the biggest medical scandals of the 21st century’ in UK Parliament. Yet, the ‘therapies’ recommended as a result of this study remain. Both ‘treatments’ are not in line with with the scientific consensus.
- Doctors who do not believe M.E/C.F.S to be a real disease are ‘treating’ patients in accordance with their own false beliefs rather than heeding the scientific consensus.
- Patients are having their voice limited by being accused of being online trolls or activists when they oppose political or organisational decisions made about their disease.
- Patients are visibly publicly discriminated against in the press and medical journals by a small group of psychiatrists who are pushing the narrative that M.E/C.F.S is a psychological illness. The narrative that the patient community is lazy, have false sickness beliefs, and are ‘benefit scroungers’ is commonly seen in the UK press.
- The scientific consensus knows that increased activity harms most M.E/C.F.S patients and yet in the UK, medical establishments use Graded Exercise Therapy as a ‘treatment’. We believe this to be unlawful as it goes against the scientific consensus on the neurological disease.
- M.E/C.F.S is not being ‘coded’ correctly in the UK. Drs are refusing to give patients a M.E/C.F.S to ‘save them from the stigma’ or are ‘coding’ it as anxiety. This means that they are keeping inaccurate records and are not meeting their legal obligations. This is part of the reason we are having to estimate the prevalence of M.E/C.F.S in the UK (and worldwide). The latest estimate was 250,000 in the UK, however this estimate is now over a decade old and we know that there are around 9,000 new cases every year. Only around 5% of M.E/C.F.S patients recover and that is naturally without intervention.
- Some M.E/C.F.S patients in various countries have been institutionalised. They have been ‘treated’ for psychiatric illnesses and had medicines taken away. Many of these patients have deteriorated as a result. None of these patients have ‘improved’ or ‘recovered’ as a result of psychiatric intervention.
- The parents of children and young adults are being falsely accused of Fabricated or Induced Illness by teachers and social workers. Hundreds of cases have now been dismissed from court in the UK due to a lack of evidence. These false allegations of abuse cause untold anguish to these families, often the children are removed from the family home and are put into foster care.
- Please be in no doubt, all policy and guidelines implemented in the UK have an impact around the world. There are many countries that have adopted Graded Exercise Therapy as a result of the National Institute of Health and Care Excellence (NICE) guidelines of 2007. Naturally, this means that the current ‘unprecedented’ NICE guidelines delay is impacting patient care around the world. While we wait for the publication of new guidelines, the outdated and harmful guidelines from 2007 have not been withdrawn. We believe this will be harmful to many newly diagnosed patients in the interim period – this delay is also impacting Long Covid patients who are exhibiting Post Exertion Malaise, the key defining characteristic of M.E/C.F.S and the reason increased activity is harmful. Long Covid patients are impacted by policy and guidelines on M.E/C.F.S due to the startling similarities between the two.
Stripy Lightbulb CIC is a Community Interest Company that works for the benefit of the M.E/C.F.S patient community by educating professionals about the disease. We strongly believe the poor knowledgebase on the disease is a factor in the patient experience of having the disease, however, improving the knowledgebase does not address the human rights abuses.
We would be grateful if you could consider reviewing how this disease is ‘managed’ in the UK, at least 30 million lives worldwide are waiting for these injustices to be acknowledged and rectified. For many, it is too late, their ill health was stigmatised and they were abused until their final moments, those of us who work for the benefit of the patient community hope to see positive social change within our lifetimes.
We look forward to hearing from you.
Sally Callow (Managing Director) and Chantelle Martin (Director and Occupational Therapist)
Yesterday, 5th January 2022, we contacted the JCHR again as no response had been received. Today, we received an email that signposted us to other departments as JCHR’s focus is elsewhere at the moment. We will now be sending emails to 3 other Government departments AND chasing our letters to the WHO and UN.
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