It has been more than three years since the launch of a vital campaign to get the government to set up reporting mechanisms for patients harmed by controversial non-pharmaceutical medical treatments. Specifically, the campaign sought to right the appalling wrong that was decades of controversial treatments clinicians had forced on myalgic encephalomyelitis (ME/CFS) patients.
Moreover, this would have important ramifications for long Covid patients too – by 2021 already experiencing the same medical malpractice in harmful treatments like exercise therapy. Alongside them, this was set to benefit many other long medically abused chronically ill patients with similarly neglected conditions, such as the Ehlers-Danlos syndromes (EDS) for instance.
However, in that time, successive governments, the NHS, and relevant agencies have done nothing to address the appalling reporting system gap. And shamefully, they still are. It’s why the campaign’s founder has now escalated matters – and it involves holding Labour Party health secretary Wes Streeting’s feet to the fire.
ME/CFS treatment: a long history of harm
A Covid-19 pandemic triggered generation continues to swell the ranks of millions living with devastating post-viral chronic illness. Already, something painfully predictable to the unknown hundreds of thousands, if not more people living with ME/CFS has been happening. That is: history has been tragically repeating itself.
For decades, clinicians had been prescribing two non-pharmaceutical treatments to ME patients. The problem was though, people living with ME were consistently reporting that these were harming them. The two treatments in question are graded exercise therapy (GET) and cognitive behaviour therapy (CBT). And now, these same two treatments are doing the same to long Covid patients too.
After years of ME patients fighting for recognition that these were dangerous, in October 2021, the National Institute for Health and Care Excellence (NICE) finally updated its treatment guidelines for ME. It removed GET as a recommended treatment, and downgraded Cognitive Behaviour Therapy (CBT).
You might therefore expect that NHS ME services and medical professionals would stop using these treatments. In reality though, this is not what happened. It was not least because there was immediate pushback from certain medical circles. In particular, there’s a long history of a vested biopsychosocial lobby of psychiatrists and scientists. These have long maintained the efficacy of these dangerous treatments against all the evidence of their harms to patients. You can read more on this history here.
Some of the most prominent actors in this have been various Royal Colleges who immediately struck out at the new guidelines. Representing a range of medical specialisms and services from psychiatry to general practice, they issued a joint statement defending GET and CBT.
Shake It Up campaign to tackle controversial ME/CFS treatments
So, in spite of the guideline change, many in the community had concerns that medical professionals wouldn’t adhere to them. Long-time campaigner Sally Callow runs the campaign social enterprise ME Foggy Dog alongside an accredited ME/CFS training organisation called Stripy Lightbulb CIC. She lives with ME herself, and was among those with deep concerns.
It was why, pre-empting this in August 2021, Callow launched her Shake It Up campaign. Notably, this aimed to put pressure on the government to set up an official, centralised reporting system for patients. The idea was that it would enable patients to register harm from treatments like GET and CBT. Alongside this, it would mean there would be a centralised database to track the effects of these treatments.
Currently, the Medicines and Healthcare Products Regulatory Agency (MHRA) runs a “Yellow Card” scheme for reporting harm from treatments. As it stands though, this is only for pharmaceutical ones – including things like medicines and medical devices. This provides:
an early warning that the safety of a medicine or a medical device may require further investigation.
So, there was no equivalent mechanism in place for non-pharmaceutical treatments. It was this that Callow wanted the government to change. She started by emailing the MHRA. However, it was to little avail. Its brief response washed its hands of any responsibility for implementing one:
Please note that these types of treatments fall outside the remit of the MHRA and therefore unfortunately we are unable to help. Our understanding is that it might be done via the HCP or organisation providing the treatment.
Petition brings the scale of abuse to light
In November 2021, Callow followed also this up with a petition. This was to the then-health secretary Victoria Atkins, health minister Andrew Stephenson, and the then-CEO of NHS England Amanda Pritchard.
By its close in September 2024, it had garnered nearly 10,000 signatures. Crucially, the petition was also a testament to the vast scale of medical harm from GET and CBT. This was because, huge numbers of signees plastered the petition with their own stories of neglect and abuse.
ME/CFS patient Sam Bartlett wrote:
Being ‘prescribed’ graded exercise therapy destroyed the little independence I had left. I now need a carer and cannot leave the bedroom with out help. At 35 my life stopped.
There is literally no where to go to complain about the ‘treatment’. We need a yellow card system for holistic therapies.
Echoing a painfully, shamefully similar experience, another expressed:
I am signing because physical therapy took me from mild with moderate flares, to moderate with severe flares that now last months. It has taken my life away and has taken the mother my kids knew me to bed, away from them.
Other petition comments highlighted how the reporting mechanism would have far-reaching impacts for disabled people living with a range of health conditions. One noted that autistic people could benefit from it, to report harmful treatments like applied behaviour analysis (ABA) being weaponised against them:
This is so important. For ME patients becoming bedbound from GET, for autistic children being scarred from ABA. For everyone, just on principle. Anything that has the potential to help (not that either of those examples do in the long run…) can also harm. Both need to be acknowledged.
Governments’ continued ‘naive and blinkered’ neglect of ME/CFS harms
Alongside the petition, Callow contacted a number of government and shadow ministers. One was Labour’s then shadow minister for disabled people Vicky Foxcroft. Foxcroft tabled a number of written questions in parliament about setting up this reporting system.
However, the then Conservative government’s response was disappointing to say the least. Health minister Edward Argar replied that:
There are no plans to put in place a new reporting system to enable myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) patients to report harms resulting from graded exercise therapy. The National Institute for Health and Care Excellence’s updated guideline does not recommend the use of graded exercise therapy in the management of ME/CFS and clinicians are expected to take this recommendation fully into account in the care and treatment of individual patients.
All patients have the right to make a complaint about any aspect of National Health Service care, treatment or service, and this is firmly written into the NHS Constitution. Most hospitals have a Patient Advice and Liaison Service which can be contacted if there is a problem with the treatment or care received while in hospital.
Callow noted about this on her campaign’s website:
I believe this answer to be naive and blinkered, M.E patients have been reporting harms to their healthcare provider, CCG and PALS for well over a decade. These reports are not taken seriously and look where we are today.
Ultimately, the government and responsible agencies continued to ignore Callow and more than 9,000 people’s call for a reporting mechanism.
Now, Callow has revived the campaign because she believes it is the opportune time to put once again shake things up. As she wrote on her website, she has instigated this because she feels:
the change in NHS senior management and the rumoured change of direction now being sought by Secretary of State for Health and Social Care, Wes Streeting MP, could be the ‘opportunity’ we’ve been waiting for.
Notably, former NHS England CEO Amanda Pritchard had largely dismissed the campaign in 2021. Her assistant had said that:
The NHS has a patient/public reporting route for patient safety incidents. However, given the therapy will depend to a large degree on the individual’s own situation and tolerance, it may not be appropriate to use this for CFS/ME. If a patient believes that a treatment they have received has not been effective or has had side effects, their normal first route to report this should be to the organisation that provided the treatment through the Patient Advice and Liaison Service (PALS). This should enable adjustment of the treatment. It also provides feedback to that organisation that may enable them to adjust the treatment they offer for other similar patients.
So with a change in NHS management imminent, Callow’s first move? Submitting a formal complaint to health secretary Wes Streeting over the government and NHS’s continued inaction.
Negligence in patient safety
Crucially, Callow has called out the “ongoing failure to implement a robust reporting system” as “negligence in patient safety”. In this, she wrote how she believes that the government dragging its heels over the campaign’s demands were:
a deliberate attempt to avoid collecting data on potential harms arising from these treatments, thereby preventing proper scrutiny and accountability.
What’s more, Callow’s letter underscored how it constituted:
a violation of fundamental patient safety principles.
As a result, the complaint demanded an “immediate and thorough investigation”. It argued that this should review:
- The reasons for the continued failure to implement a reporting system for adverse events related to NPTs for ME/CFS.
- The number of patients who have potentially experienced harm from these treatments.
- The steps that will be taken to establish a robust and independent reporting system without further delay.
- How accountability will be ensured for those responsible for this negligence.
You can read the full letter here.
The harm from non-pharmaceutical ME/CFS treatments won’t stop with some guidelines
Callow also raised that the lack of reporting mechanism and concerted government action are not the only things that have gone unchanged since she launched the campaign. Most significantly, the picture for ME/CFS and long Covid patients remains much the same. That is, medical professionals are still harming patients with these problematic treatments. This is in spite of the NICE guideline update that:
explicitly recommended against the use of GET due to evidence of harm.
At the time Callow created the petition, she told the Canary:
Since the guideline was published by NICE in October 2021, it has been very clear to me that… the harm from these non-pharmaceutical ‘treatments’ wouldn’t stop.
In the absence of adherence to NICE’s guideline, patients need a reporting system that is official and centralised so reports of harm can be collated and counted.
For decades, patients have complained to their NHS Trust, GP practice… and sent anecdotal ‘evidence’ to ME/CFS charities, but the complaints have not lead to change. The harmful ‘treatments’ continue to be recommended to ME/CFS patients across the UK today.
The Canary’s Steve Topple had also separately warned that the updated guidelines wouldn’t halt “the whitewash” of the disease’s “systemic problems”.
One of the glaring issues was quite simply that – these are just ‘guidelines’ in every sense of the word. That is, as he pointed out, by NICE’s own admission, they aren’t mandatory for doctors to follow.
Ultimately, he predicted that the NICE guideline update would amount to very little in practice.
Clinicians STILL pushing GET and CBT and there’s proof aplenty
How right both Callow and Topple, and plenty of other understandably wary ME/CFS patients were.
In May 2023, through a series of Freedom of Information (FOI) requests, charity Action for ME laid bare the appallingly poor uptake of the new guidelines. Notably, it found that just 28% of NHS Trusts and integrated care boards (ICBs) had implemented them.
In 2025, it’s unlikely this has changed dramatically either. In fact, the Canary has evidenced how throughout 2024, NHS services continued to deliver repackaged GET programmes to ME patients. For instance, Bristol ME service lead Peter Gladwell pushes a “pacing up” approach to patients. In practice, it’s a form of GET, because it involves fixed incremental increases in activity, including forms of exercise. And Gladwell’s “pacing up” is hardly the only GET rebrand in circulation either. This was of course another issue that Topple also flagged would happen.
Moreover, it was with no small irony that Action for ME has endorsed this approach. Notably, Gladwell has promulgated his GET-lite in a guide for the organisation. On top of this, in September, Action for ME published a care plan that Gladwell had put together for people living with ME. It came under fire from the ME community for this, because again, it recommended this “pacing up” GET.
Given all this, it’s also highly probable that Action for ME’s figures on guideline compliant NHS Trusts and ICBs, were overestimates as well. After all, the charity has hardly shown itself to be a reliable authority on what constitutes the dangerous treatment.
A formal response to the complaint or more action to come
To sum up, clinicians continue to flout the guidelines and promote these controversial treatments. It’s for this reason that an official reporting system for patients to log these harms is so vital. In its continuing absence, Callow set out to the secretary of state how:
patients are left without recourse when they suffer worsening health due to inappropriate treatment recommendations.
Now, if the Labour Party government fails to take action, Callow is prepared to step things up further as well. Her letter to Streeting warns that:
We expect a formal response to this complaint within 6 weeks outlining the actions that will be taken to address our concerns. We are prepared to escalate this matter to the Parliamentary and Health Service Ombudsman and other relevant authorities if a satisfactory response is not received.
When Callow started the campaign in 2021, there had been years of anecdotal reports of treatment harm from ME/CFS patients. It was already appalling then that there was no centralised mechanism for reporting these non-pharmaceutical treatments.
Now, more than three years on, it’s utterly disgraceful that successive governments have done absolutely nothing to rectify this. Physician harm from these treatments for ME – and now long Covid patients too – shamefully endures. A reporting mechanism could go some way to giving them an avenue they need to hold clinicians to account for this. And for that matter, the same is true for the many others chronically ill patients that medical professionals persist in abusing too.
Featured image via the Canary
