OPEN LETTER DEMANDS ACTION TO SAFEGUARD PEOPLE WITH ME, NOT JUST POST-COVID PATIENTS

#MEAction UK have once again written to the National Institute for Health and Care Excellence (NICE) imploring them to act to safeguard people with ME from harm, after their recent statement cautioning that the recommendation of graded exercise therapy should not be assumed to apply to patients with post-COVID symptoms.

Development and publication of the new ME/CFS guideline is now set to take almost 4 years – that is time in which countless more people with ME have been prescribed graded exercise therapy to their detriment. It is functioning and livelihoods lost that may never be recovered. 

Read our open letter to NICE:

Dear Helen Finn,

Thank you for your latest email. We note that NICE has now put out a short statement under the title ‘interim findings’ clarifying that the 2007 recommendation of graded exercise therapy (GET) for people with mild and moderate ME should not be assumed to apply to people with post-COVID fatigue. 

#MEAction UK are pleased to finally see movement from NICE on this issue, but it is still imperative to communicate to you that this step continues to fail people with ME, and will also fail people who develop ME post-COVID.

We are relieved that patients experiencing post-COVID symptoms will not initially be subject to the same harmful recommendation from NICE as people with ME have been for the last 13 years. 

We would like to know on what evidence base you decided to make this statement. At present, we can only be led to assume that you have made this statement based upon the harm that people with ME have experienced, therefore we can see no reason to withhold a similar warning relating to ME itself.

After multiple delays – some unavoidable –  development and publication of the new ME/CFS guideline is now set to take almost 4 years. At every stage #MEAction and other patient organisations have made you aware that the existing guidelines are harmful. The evidence base clearly demonstrates harm. Other countries have already taken steps to end harmful practices. We have sent you individual stories of harm from thousands of people and we have made you aware of the personal impact behind the decision to leave harmful recommendations in place. You are concerned enough to issue a statement saying that GET is not recommended for post-COVID patients and yet you do not seem to have the same concern for people with ME. NICE can choose to act, and we once again implore you to do so.

As we will be publishing this letter and your response on our website and social media, please let us know if anything in your response is to be considered confidential. 

Kind regards,

#MEAction UK

Facebook
Twitter
WhatsApp
Email

Latest News

Facets of ME: Temperature Dysregulation

Welcome to June’s #FacetsOfME! Facets of ME is an educational feature where we dive into a particular aspect (or facet) of ME and explore it more in depth. This month we are focusing on temperature dysregulation- heat and cold intolerance. It is surprising how difficult this symptom can be to manage until you experience it.

Read More »

Dept. of Labor Updates Information on ME/CFS for Workers, Employers

The U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) has updated the information on ME/CFS provided at its Job Accommodation Network website to align with the most current CDC guidance. This action will help workers and employers find accurate information on ME/CFS and combat stigma and improve workplace outcomes. At #MEAction’s recent meeting

Read More »

#MillionsMissing: 7 Days in Self Portraits with ME/CFS

After taking #MEAction’s photography workshop with photographer Lucia Doynel for #MillionsMissing, Terra Dumont produced these stunning photos as a glimpse into her life as someone living with ME/CFS. Terra spread this experience over 7 days, focusing on a different theme each day. See her wonderful work and accompanying commentary below. Click on any of the

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top