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Please sign the MEA's petition asking NICE to review the guidelines for ME (CLOSING MONDAY JULY 24)

Countrygirl

Senior Member
Messages
5,425
Location
UK
This petition is to run for a week, so please sign NOW.


https://www.change.org/p/petition-t...fit-for-purpose-and-needs-a-complete-revision

This is the wording from the petition:


Overview The NICE guideline for CFS/ME is currently undergoing an official review but we understand the recommendation before the committee is for no action to be taken.

As stakeholders, the ME Association believes that the current guideline is not fit for purpose and that we are not being afforded a fair opportunity to help produce a better version.

We believe the guideline should be improved to reflect international biomedical research and medical opinion and the overwhelming evidence against current treatment recommendations - specifically in relation to graded exercise therapy.

We also feel recent re-analysis of PACE Trial data and growing international concern about the efficacy of this research, and those therapies it examined, should result in a reappraisal of their use in this guideline.

We are also moved by the apparent failure of secondary care to adopt the NICE diagnostic criteria and other aspects of the current guideline, including specialist provision - most notably home visits - for those severely affected.

The ME Association will be taking part in the NICE consultation process (which begins 10th July and continues for two weeks), but we wanted to offer the patient community the chance to demonstrate to NICE just how unhappy it is with the current guideline.

Summary of our demands:

  • We want a complete and proper review of the existing guideline with full stakeholder input and for it to include recognition of published and emerging international research evidence and medical opinion
  • We want the NICE guideline returned to the active list where it can be reviewed every two years and be updated to reflect emerging research knowledge, until such time as stakeholders determine it to be satisfactory
  • We want NICE to amend the current guideline to appropriately recognise CFS/ME as a neurological disease – in accordance with the position taken by the UK Govt. and Dept. of Health – and give more regard to characteristic physical symptoms
  • We want NICE to remove Graded Exercise Therapy as the recommended treatment for patients who are moderately affected and to place an appropriate health warning against general use of this therapy in CFS/ME specialist clinics
  • We want NICE to recognise that patient evidence relating to illness management indicates that 'pacing' is the most employed approach and for NICE to ensure it is recommended for all illness severities
  • We want NICE to acknowledge that despite their guideline, clinical care and specialist provision is falling short of the standards originally expected - particularly in relation to those who are severely affected
This petition will remain open for seven days, and then we will ensure it is presented to the NICE guideline committee for delivery to Sir Andrew Dillon.

For more information, please visit the ME Association websiteand Facebook pages.

This petition will be delivered to:
  • Chief Executive, NICE guidance executive
    Sir Andrew Dillon

Here is the quick comment I added with my name:

The NICE guidelines are not merely not 'fit for purpose' but their application causes harm......often severe harm........to patients. There is no scientific evidence that CBT improves ME on follow up while GET damages patients. Three studies of a total of 5 000 patients revealed that over 75% suffered harm, often severe harm, from GET. Mildly affected patients became bedbound as a result of management strategies recommended by NICE. If a pharmaceutical drug was associated with so much harm, it would be immediately withdrawn. NICE urgently needs to acknowledge the emerging international scientific evidence that clearly contradicts the use of GET that they continue to promote and until they do they are responsible for harming patients with this devastating illness. Recent studies have provided further proof of the characteristic feature of intolerance of exercise, which is the main feature of this disease: calibrated exercise on a bicycle ergometer on two consecutive days indicates clear difference in muscle metabolism between ME patients and healthy sedentary controls . In ME patients the 'anaerobic threshold' lowers on the second day whereas it increases in controls. Hence enforced and increasing levels of exercise as recommended by NICE can only damage the ME patient and does cause many to become bedbound. Similarly electrical stimulation of the patient's muscle in vitro reveals severe impairments of metabolism which are not seen in healthy controls. It is entirely unethical of NICE to continue to ignore the international science when their ongoing failure to change the guidelines is causing so much physical harm and distress to a large number of patients.
 
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Messages
2,391
Location
UK
Signed! This one is so very important. Commented along with signing, but not sure if visible. My wife will do so later today.

Still can't see my comment, so in case it does not appear, this is what I said:-
The NICE guidelines are very misguided. There are strong indications that GET causes great harm to some people, and no scientific evidence disproving this.
 
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Countrygirl

Senior Member
Messages
5,425
Location
UK
I have just received information from NICE on the consultation process that starts today:

https://www.nice.org.uk/guidance/cg...um=email&utm_source=shemail&utm_campaign=cg53

  • Comments from registered stakeholders and nominated expert reviewers ONLY will be sent to the review team at the end of the consultation. These will inform the final decision made by the NICE Guidance Executive.
We do need the names of the 'nominated expert reviewers' as well as those of the 'review team'. Do they include the usual culprits by any chance? Who exactly 'nominated' them?
 

charles shepherd

Senior Member
Messages
2,239
Please @charles shepherd would you clarify if people from other countries can sign as I think they are doing so at the moment?

Thanks.

I think it would be perfectly reasonable to allow anyone who has ME/CFS (or cares for someone with ME/CFS), and has taken an interest in the NICE guideline on ME/CFS, to sign this MEA petition.

NICE guidelines are referred to all over the world - so they can influence how countries outside the UK proceed with guidance and recommendations on the management of ME/CFS.

CS