Hi,
As I said in this video, the responses received from Lord Kamall and NHS CEO Amanda Pritchard have so far not addressed my concerns about the need for this new system to report harms from non-pharmaceutical ‘treatments’. I have not yet received a reply from Sajid Javid MP – Secretary of State for Health and Social Care.
Signatures Are Going Up! – Video update
Link to the ‘Shake It Up’ campaign page on mefoggydog.org – everything you need to know is in one place.
Journalist Steve Topple, included Lord Kamall’s response to my first email within his article ‘The government faces pressure over ‘harmful’ NHS treatments’ in The Canary, thank you Steve for your ongoing support.
Here is the response email I sent to Lord Kamall last night.
Dear Lord Kamall,
Thank you for your letter dated 23rd November 2021 that was forwarded to me by Penny Mordaunt MP’s office.
Can I please respectfully point out that you did not answer my question? I was asking about the possibility of the creation of a new system to report harms from non-pharmaceutical ‘treatments’.
Extract from the email sent to Penny Mordaunt MP on 18th August 2021 (then forwarded to Department of Health and Social Care/your Westminster office).
‘As the pause is indefinite, I feel the only course of action left for M.E/C.F.S patients is to lobby for a process to report harms as a result of this ‘treatment’. There are ‘no reported harms’ from Graded Exercise Therapy because there is no process available to patients to report harms from this specific ‘treatment’ as it is not a drug or device.
However, Graded Exercise Therapy is being recommended as a ‘treatment’ and falsely hailed as ‘curative’ and so should be reportable if it causes a deterioration of symptoms in my opinion.
Can I please ask for your support in asking the Department of Health and Social Care for a new process to be implemented thus giving patients the opportunity to report harms from this ‘treatment’?’
As we now know, the ME/CFS guideline was published on 29th October 2021 and GET and CBT are no longer to be recommended as ‘treatments’. However, in practice, today, this is still happening within GP surgeries and ‘CFS clinics’. In many cases, GET has simply been rebranded and uses different terminology. As you will be aware, a few Royal Colleges have publicly stated that they will not support the updated guideline.
A month ago, with my social enterprise ME Foggy Dog, I launched the ‘Shake It Up‘ campaign in which I am petitioning Savid Javid MP and NHS CEO Amanda Pritchard for the creation of a new mechanism to report harms from non-pharmaceutical ‘treatments’. I have also asked supporters to email their MP and you, yourself, in relation to this issue (following your response to Baroness Finlay of Llandaff in the House of Lords on the 12th October 2021 relating to this issue).
As you can see from the comments below from a few of those who have signed the petition, non-pharmaceutical ‘treatments’ have historically harmed patients in many different patient groups including M.E/C.F.S.
‘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.
‘A friend of mine suffers from deep-vein thrombosis, and fourteen years ago when the DVT was so severe that he could barely walk, his doctor kept urging him to exercise more. It was only when I accompanied him to an appointment that the doctor actually deigned to examine him – and, seeing his lumpy blocked veins for the first time, exclaimed in horror, ‘Good God, you don’t mean to tell me you WALKED here?’ It is terrifying how easily doctors will prescribe something that is usually helpful, like exercise, without taking into account the patient’s condition or even examining them.’
‘I’m signing this as GET set my pacing back several years’.
‘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.’
‘In support of the ME/CFS community whose members suffered harm from GET but were unable to report it officially.’
‘I’ve had ME for 48 years. Like others, I’ve been ridiculed, gaslighted, had my medical concerns brushed aside and generally been at the receiving end of medical abuse for all that time. Doctors have prescribed exercise, CBT, physio, weight loss. Just attending it all to prove them wrong was harmful.’
Given that one of the objections to the NICE scientific review by the Royal Colleges was their perceived lack of quantitative data, surely the creation of this new system would resolve that issue for future reviews, policy, and research? I’m particularly concerned for Long Covid patients who are also, in some areas of the UK, being asked to participate in GET and CBT despite 46% meeting the diagnostic criteria for M.E/C.F.S. I appreciate that the M.E/C.F.S guideline is not to be used for Long Covid however, tens of thousands of new M.E/C.F.S patients are caught up under the umbrella of Long Covid. These patients need somewhere central and official to report harms.
Are you aware that gym instructors are now becoming accredited to accept GP referrals to offer ‘exercise-based rehab’ to Long Covid patients? I contacted the company who is training and accrediting these gym instructors and asked if they were educating them about Post-Exertional Malaise and the answer was no. M.E/C.F.S patients, in some areas of the UK, are now also being sent to these gym instructors for ‘exercise-based rehab’ in direct opposition to what was recommended by NICE. These gym instructors could never be described as ‘M.E/C.F.S specialists’ and in these instances ‘exercise-based rehab’ is being recommended as a ‘treatment’.
For well over a decade, M.E/C.F.S patients have been complaining to their NHS trust, GP surgery, PALS, or ‘CFS clinic’ but these complaints are not logged or collated centrally and no positive action is taken. This needs to change.
In recent days, I have been very concerned to see that some Royal Colleges and NHS England tried to derail the NICE review process by text message ‘lobbying’. Please read – https://domsalisbury.github.io/mecfs/nice-mecfs-guideline-pause/ You wrote in your email of the importance of the NICE guideline review in terms of improving patient care, I found this ‘lobbying’ shocking given that NICE is supposed to be an independent body.
Finally, if GET and CBT do not harm, as Royal Colleges and NHS England keep insisting, why is there a reluctance to have somewhere central and official for patients to report harms? There are copious amounts of anecdotal evidence of harms that have been submitted to UK charities, as reviewed by NICE, we now need to quantify it.
I look forward to hearing from you.
Yours respectfully,
Sally Callow
Onwards and upwards
When I started this petition and ‘Shake It Up’ campaign, I was in no doubt that this would be a hard slog but one that I am very much ‘up for’. As I said in today’s video, we are fighting an ingrained, long standing FALSE belief that non-pharmaceutical ‘treatments’ cannot, and do not, harm patients. I have plans in place to keep building momentum and those plans extend into Spring/Summer 2022.
Thanks again for your support.
Love Sally (and Foggy OBVIOUSLY)
xx