We demand the creation of a new mechanism to report non-pharmaceutical 'treatment' harms.

We demand the creation of a new mechanism to report non-pharmaceutical 'treatment' harms.

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ME Foggy Dog started this petition to Sajid Javid (Secretary of State for Health and Social Care) and

Non-pharmaceutical 'treatments' are prescribed for many diseases by the NHS. However, patients do not have anywhere to report harms to. There is a widespread false assumption that non-pharmaceutical 'treatments' cannot harm patients.

This petition specifically relates to the issues encountered by the M.E/C.F.S and Long Covid patient communities, however, a new mechanism will benefit all patients, with any illness, who are harmed by non-pharmaceutical 'treatments'.

At a very basic level, M.E/C.F.S (and many Long Covid patients) patients are intolerant to increased exertion (the key defining characteristic is Post-Exertional Malaise) and yet the 'treatment' patients are given is 'exercise-based' - historically in the form of Graded Exercise Therapy.

On 29th October, NICE published their latest M.E/C.F.S guideline. They specifically stated that exercised-based therapies should not be recommended to M.E/C.F.S patients (unless the patient feels able to participate and requests it).

It is becoming increasingly clear that proponents of Graded Exercise Therapy and Cognitive Behavioural Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome are going to 'push back' against the new NICE guidelines and continue to offer rebranded GET to patients with M.E/C.F.S and Long Covid.

Their 'push back' started a few days after the publication of the new guideline - https://www.rcplondon.ac.uk/news/medical-leaders-sign-joint-statement-response-nice-guidance-mecfs The Royal College of General Practitioners has now also publicly commented in favour of the Lightning Process - again, NICE has stated this should not be recommended, in any form or name, to M.E/C.F.S patients.

NICE has spent over 3 years reviewing scientific evidence and has decided that these treatments either harm or are ineffective for patients.

Such is the political history of M.E/C.F.S, this 'push back' was fully anticipated. This is why, on the 24th October, before the guideline was published, I emailed variations of the letter below to:

Lord Kamall, Sajid Javid MP (Secretary of State for Health and Social Care), Department of Health and Social Care, I also emailed National Voices and Healthwatch to ask for their support in campaigning for the creation of a new reporting mechanism (No replies have been received thus far - 2/11/2021).

LETTER

As a M.E/C.F.S and Long Covid patient, M.E/C.F.S advocate, and social entrepreneur tackling the M.E/C.F.S social issue, I was pleased to hear this question (below) from Baroness Finlay of Llandaff in the House of Lords on the 12th October 2021.

'Will the Government work with commissioners to ensure that appropriate specialist services for patients with ME are developed and continue, and that services monitor accounts of harms as well as benefits?'

As you will be aware aware, the NICE guidelines have been delayed and an 'unprecedented' roundtable was held last week. The guidelines are anticipated to be published either this week or next. 

Anecdotally, as a M.E/C.F.S advocate, I have seen a number of medical professionals state on social media that, irrespective of what is included within the NICE guidelines, they will continue to recommend Graded Exercise Therapy to M.E/C.F.S patients.

I have contacted the Medicines and Healthcare products Regulatory Authority (MHRA) and asked if they could create a system to report harms, I am aware that the MHRA deal with devices and drug treatments. I believe that anything recommended as a 'treatment' by the NHS and NHS England should be regulated. That includes GET and increased activity. The MHRA have told me this does not come under their remit.

Interestingly, proponents of GET have expressed surprise at claims of harms as there have been no officially reported harms from the patient community. This is because there is no where to report harm to. I strongly believe that a new reporting system has to be implemented. Patients need the ability to officially report that GET, or increased activity by any name, has negatively impacted their health.

Given that many Long Covid patients now also have the key defining characteristic of M.E - Post Exertion Malaise and are being referred by GPs for exercise 'rehab' programmes in leisure centres and gyms, there is a very clear need for a mechanism to report harms from exercise. Most Physiotherapists do not know how to screen for PEM, it is highly doubtful that gym instructors know how to screen for it when it is not included in any Physiology handbooks. As the founder of Stripy Lightbulb CIC, an online training company that trains professionals (healthcare, business, and education) about the poorly understood disease, I was surprised and shocked by this development. To offer these exercise 'rehab' programmes, instructors have to complete commercial training in order to be qualified to 'rehabilitate' post-viral, chronically sick patients. Unfortunately, according to the instructors I have spoken to, the training does not include Post-Exertional Malaise. This past week, I have been told by M.E/C.F.S patients that they too have been referred to these exercise 'rehab' programmes by their GP.

I am concerned that increased numbers of patients will be harmed and left with no mechanism by which to report problems. 

I would be grateful for your support in this matter.

Yours sincerely,

Sally Callow 

I hope you can clearly see the issue I hope to tackle with this petition. M.E/C.F.S patients have needed this reporting mechanism for many years, and now this need is widening to encompass the Long Covid community.

In a perfect world, the NICE guidelines would be accepted in their entirety and patients would not need to have a mechanism to report harms. However, as the 'push back' demonstrates, change will be slow and there is significant risk of harm to patients with Post Exertional Malaise from GET and CBT The M.E/C.F.S-specific CBT promotes the notion of 'false sickness beliefs' and encourages patients to 'push through' and not stop when their body deteriorates.

A new mechanism to report harms is necessary for:

Graded Exercise Therapy

Cognitive Behavioural Therapy

Lightning Process (in any form/under any name).

This mechanism will encompass other non-pharmaceutical 'treatments' offered by NHS and NHS England for other diseases.

This is an urgent matter that needs action from the Department of Health and Social Care and NHS.

Please sign the petition, thank you for your support.

Sally Callow - MEFoggydog.org and stripylightbulb.com

 

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At 5,000 signatures, this petition is more likely to get picked up by local news!