The extraordinary decision of NICE not to publish the ME/CFS Guidelines is dangerous and quite disgraceful. They were due to be published on 18th August 2021, but without any reasoned explanation, that didn’t happen.
The draft guidelines, which were published on 10th November 2020, made some clear changes to the way that people with ME/CFS should be treated by healthcare professionals. They removed CBT as a ‘cure’ for ME/CFS and accepted that GET – graded exercise therapy – was not an appropriate treatment either. Both of these changes were welcomed by many patient groups and DPOs.
So, why were the guidelines not published? We can only speculate as to the true reason and that may not be a wise option from a legal perspective. We fear that undue influence has lead NICE into some very murky and nasty ethical waters.
What we do know is that copies of the guidelines have been sent out to a large number of recipients via 280 stakeholder groups, subject to confidentiality agreements which were due to expire on publication at 12.01am on 18 August, and that there has also been press reporting of the guideline. So the information is already in the public domain.
We call on those stakeholders and individuals to be open and accountable to the very people they seek to represent. You have a public duty to disclose and publish the full guidance, so that people with ME/CFS can have the knowledge they need to advocate for themselves.
- We call on NICE to publish immediately so that everyone can see what the current document says and understand what the argument is about. The public interest in knowing this is overwhelming and the current statement fails to address community concerns.
- In the absence of NICE doing this, call on stakeholders who have the document to publish en masse by agreement and at an agreed time in order to provide universal access.
We would also urge all those who are affected by the failure of NICE to publish these guidelines to contact their MP. It is vital that this matter can be raised immediately when parliament begins its next session on 6th September. The ME Association have a great template letter you can use: https://bit.ly/3ktpBAz
Please also sign this petition:
Chronic Illness Inclusion has influenced a report on disability employment by the Work and Pensions Committee
In April this year Catherine Hale gave evidence to a committee of MPs. She spoke about the measures needed to create more job opportunities for people with energy-limiting chronic illness (ELCI).
Source: Disabled people in employment, Briefing Paper 7540, House of Commons Library, May 2021
In July, the Work and Pensions Committee, chaired by the Rt Hon Stephen Timms, published its report into the disability employment gap. The disability employment gap is the difference between the proportion of disabled and non-disabled people in employment. It currently stands at nearly 30 percentage points.
The Committee based its recommendations on evidence from a number of experts and charities. The report includes recommendations on the collection of data about disabled people in work; employment support and Jobcentre Plus; the Access to Work scheme; the impact of Covid-19 on disabled people in work; and the disability benefits system, and more.
The fact that CII was included among the large national charities giving evidence was a big step forward for the chronic illness community. ELCI, or energy impairment, has not previously been considered by politicians or policy makers as a distinct group of disabled people, or ‘impairment group’, with specific needs.
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Our latest policy report on ELCI, employment and social security
The ‘I already have a job…’ report, by Catherine Hale (CII), Stef Benstead (CII), Dr Kate Hardy (Leeds University Business School) and Dr Jo Ingold (Deakin University), sets out how government, employers and the benefits system are failing millions of people in the UK with Energy Limiting Chronic Illnesses – (ELCIs).
Although one-in-three disabled people of working age experiences problems with stamina, breathing or fatigue, the report says that their needs are not reflected in the workplace, in legislation, or by disability assessments like the Work Capability Assessment (WCA).
Despite ELCIs affecting almost 5 million adults in the UK, these people are hidden within disability-related policies because their lived experiences of illness and impairment is widely misunderstood, often discredited, denied and disbelieved.
Lack of knowledge about ELCIs and how reasonable adjustments should work, make it impossible for people with these conditions do paid work. The rapid move to home working during the pandemic shows that such change is possible. It is imperative that employers continue such beneficial practices.
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CII is among a huge number of disabled activists and Disabled People’s Organisations calling for NHS England to respect our Human Rights
The full letter, published by Disability Rights UK, reads:
“The NHS is built on the principle that we are each equal in dignity and worth. It expresses our commitment to protect one another’s right to life and to health, no matter who we are.
We recognise that the NHS faces unprecedented pressures. We know that its staff will have to make difficult decisions about who gets treatment and care and who doesn’t. We understand that they will have to judge whether people will benefit and we know that people’s existing health will be taken into account.
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Stef Benstead discusses her new book on welfare reform and the treatment of disabled people in austerity Britain.
#IsItOk that disabled people have written books about the harm that the UK government is doing to us?
In the modern hegemony of identity politics, a person is only allowed to comment on something if they have direct experience of it. So one answer is that yes, it is okay that sick and disabled people write about issues affecting them, because in fact they’re the only people who have the right to do so.
But the reality is that, whilst it is okay that sick and disabled people write about their experiences as sick and disabled people, it is not okay that those experiences are so overwhelmingly negative in breadth and depth. It’s one thing when one part of your life goes wrong and everything else is fine: you can probably manage. It’s quite another when every part is wrong: your health, your house, your income, your medical care, your local area, your support to live in your home, your support to get out of your home.
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