401

of 1,000 signatures

To Anna Gregorowski, chair of BACME

Dear Ms Gregorowski,

As individuals living with, or affected by, Myalgic Encephalomyelitis (ME, also referred to as Chronic Fatigue Syndrome, CFS), we are growing increasingly concerned by the direction of travel of BACME, and the media reports around what we consider to be harmful and damaging approaches to caring for with people with ME.
We are aware BACME has what many consider to be a controversial history. We are also aware that BACME has taken what it considers steps to rectify its previous conduct. However, as patients we feel none of that has been sufficient and that BACME is still actively harming patients right now.

We have concerns in the following areas. However, the below list is not exhaustive:

1. BAMCE-associated clinics are not following NICE guidelines. For example, Bristol CFS/ME Service using “pacing up” exercise therapy which contravenes NICE guidelines on exercise therapy. Manx Care ME/CFS service is signposting to Fighting Fatigue: Managing the Symptoms of CFS/ME by Sue Pemberton, a book which provides misinformation about post-exertional malaise (PEM) and promotes mindfulness - something which NICE that the "evidence [for] was low to very low quality. The committee agreed that there was insufficient evidence to make any recommendations" for it.

2. Referring to ME as a "primary fatigue condition" on your website and grouping it with others.

3. At times, using CFS first rather than "myalgic encephalomyelitis (ME/CFS)" as patient-preferred language.

4. Failing to fully support the roll out of Dr Nina Muirhead’s training on ME.

5. Including psychiatric diagnoses in your guidance, without any evidence base. For example, your Severely Affected Shared Practice Guide includes a section on “Disordered Eating” when there is no research to back this up. It also mentions “functional neurological symptoms”, again, with no evidence to back this up.

Moreover, current cases of the NHS neglecting people living with very severe ME are being exacerbated due to the NHS trusts claiming they are following BACME guidance – not NICE guidelines.

For example, hospitals have seemingly followed BACME guidance contained in your Severely Affected Shared Practice Guide. This states in section “3.2 Physical examination and emotional wellbeing” that:

“It is important to consider whether there is a primary mental health condition that is causing or contributing to the fatigue issues before confirming a diagnosis of ME/CFS”.

This has led to one patient’s pre-existing very severe ME diagnosis being dismissed in favour of a psychiatric one.

BACME guidance in the same booklet also states:

“Building up exposure to sound and light gently and slowly can often facilitate gradual improvement”.

Once again, there is no evidence to prove this works – and yet your guidance has been directly used by an NHS hospital on a very severe ME patient, causing them extreme pain and suffering.

In short, your organisation’s conduct is damaging the health and wellbeing of countless ME patients.

Open letter text

We would like you to:

1. Make a public statement acknowledging that Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) harmed patients, that PACE trail was flawed, and you support the NICE guidelines. So far to patient’s knowledge, you only issued a statement in October 2020 withdrawing support for the deconditioning model of ME.

2. Publicly recommend Dr Nina Muirhead’s training and CIC Stripy Lightbulb’s courses.

3. Agree to meet with people with ME and patient-led organisations like ME Action Network and the Chronic Collaboration to discuss these concerns and explain how you intend to rectify them. On this, the community would also like to know why BACME changed its status to a charitable organisation, and in what areas members' money is spent.

4. To audit all leaflets and resources on your website to reflect NICE guidelines and patient-preferred language and experience.

We would expect a response to this letter via a public statement.

Yours,
Members of the ME community, facilitated by the Chronic Collaboration.

Sign the open letter

Signers list

Rebecca Beard
Sopna Begum
John Mcguill
Grace Wilkie
Farrah Staples
Renata Ralph
Cat Fraser
Clare Copley
Joanne Frank
Owen White
Luke Sapiets
Jen Hodgson
Finn Bain
Emily Mcgregor
Jessica Bardzil
Daniel Thomas
Julie Fitch
Ingrid Weiss
Lorraine Butter
Maddy Corper
Anita Bucknall
Olivia Newman
Grace Young
Elizabeth Crouch
Nicholas Greer
Patricia Bagby
Zaeda Assane
Arrna Scott
Jane Ticehurst
Knight Paula
Leonie Potgieter
Rory Preston
Katie Ash
Joanne Oliver
Elisabeth Klaar
Louise Lee
Yvonne Foss
Cara Marshall
Alison Alt
Carol Binks
Aaron Campbell
Abdulpandor Pandore
Sarah Cumming
Esther Green
Margaret Lamont
Jay Jackson
Francesca Edwards
Joanna Baxter
Ritaashworth@Blueyonder.Co.Uk Ashworth

An open letter to Anna Gregorowski, chair of the British Association of Clinicians In ME/CFS (BACME)

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An open letter to Anna Gregorowski, chair of the British Association of Clinicians In ME/CFS (BACME)

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