• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

An Open Response to the British Psychological Society Regarding the DHSC's Plan for ME by Dr Jo Greer and Jennifer Wilson

Countrygirl

Senior Member
Messages
5,510
Location
UK
An Open Response to the British Psychological Society regarding the Department of Health and Social Care (DHSC) Interim Delivery Plan ‘Improving the experiences of people with ME/CFS’


For the past week, Dr Jo Greer and I have been composing a letter to psychologists in order to elucidate the problems experienced by ME patients and to ensure psychologists understand the severity, complexity, and potentially life-threatening nature of ME.

We were concerned that psychologists were invited to present their views on the DHSC's Interim Delivery Plan for ME by 18th September as many are unaware of the nature of the disease and misinterpret the suffering of the patient.

We had little time to create a comprehensive response that is fully supported with references and signatories of which we now have 47 psychologists and psychiatrists.
The Open Letter is now live on Google Drive and is to be found on Facebook and Twitter.



https://drive.google.com/file/d/1HRARTbZkrViSjw_8h39nt6Iw7MdKd1VE/view

47 psychologists and psychiatrists have put their signatures on the letter including Prof Hughes, Dr Marks and Prof Jason, and Prof Coyne.

You can also find it on Twitter:
 
Last edited:

Countrygirl

Senior Member
Messages
5,510
Location
UK
For those not on Twitter/X, Jo wrote this.


Open response sent to the BPS to contribute to their response to the DHSC delivery plan 'Improving the experiences of people with ME' signed by 47 psychologists, academics and psychiatrists. Hoping it will be a positive contribution to the BPS response. Please repost if you're on Twitter https://x.com/DrJoGreer/status/1702448288497033374?s=20. Many thanks to all who supported especially co-author Jenny Wilson. To anyone not on Twitter, here is the link to the open response. https://tinyurl.com/OpenResponsetoBPSreDHSCIDP
 

Gijs

Senior Member
Messages
697
Thank you for writing this letter. A clear and realistic statement. In 2023 this is still necessary. After decades, the medical community continues to cling to outdated ideas. It is not only disgraceful but criminal behavior. Many lives have been destroyed by this disease. And the doctors who should help us let us down and make fun of this disease. Psychologists and doctors (not all!): shame on you!
 

Countrygirl

Senior Member
Messages
5,510
Location
UK
I have written this as an introduction for the various sites where it is being posted:

An Open Response to the British Psychological Society regarding the Department of Health and Social Care (DHSC) Interim Delivery Plan ‘Improving the experiences of people with ME/CFS’


https://drive.google.com/file/d/1HRARTbZkrViSjw_8h39nt6Iw7MdKd1VE/view


We are a group of psychologists and academics with a special interest in Myalgic Encephalomyelitis (ME). Some of this group have lived experience of ME as patients or as parents/carers of people with ME. Perhaps most poignantly, two of our group were formerly aspirant psychologists partway through their studies before becoming ill with ME. All are mindful of the harms that have been caused to people with ME, not only by the lack of awareness, training, and knowledge of the biomedical research, but also by the evident wrongdoings of our predecessors, often informed by flawed science, bias, and misinformation (Weir, W., & Speight, N., 2021; Marks, D.F. 2023).

The above is the opening paragraph of a letter to psychologists co-authored by Dr Jo Greer and Jenny Wilson that has now been published online. It is supported by 47 psychologists and psychiatrists who signed the open letter prior to its launch on 15th September.

It is an open response to psychologists who have been invited to provide their opinion of the Department of Health and Social Care (DHSC)'s Interim Delivery Plan ‘Improving the experiences of people with ME/CFS’ Its aim is to provide accurate information about ME so that psychologists will have a sound foundation upon which to base their reply to the DHSC. The letter emphasises that it is incumbent upon psychologists to follow the codes of conduct, performance, and ethics of their respective regulatory and professional bodies. In this context, they need to understand and state that ME is a biomedical condition when talking about, talking with, thinking, or writing about people with ME and to also understand that, for many people with ME, their symptoms would be exacerbated by psychological intervention. The letter emphasises that science has confirmed that ME is a biomedical condition and any hypotheses about it being psychologically or socially derived (e.g., through deconditioning, fear avoidance, false sickness beliefs, catastrophising, hypervigilance, guilt-driven etc.) are based on flawed science and, consequently, unethical, and harmful to people with ME. Psychologists are encouraged to critically evaluate their understanding of ME in light of the biomedical findings and assess the validity, and reliability of research and training where the premise is influenced by discredited psychosocial formulations in relation to ME.

Opening the section with the sentence: 'Voices from the Shadows (Boulton, N and Biggs, J, 2011), a documentary that reveals the harsh reality of people with severe ME and their carers, poignantly exposes ME as a serious, chronic, systemic, potentially life-threatening disease that frequently and dramatically limits the activities of affected patients,' the letter describes the various aspects of the disease, amply supported by references. It continues by relating Carol Monaghan MP's description of the flawed PACE trial where she stated during the 2018 and 2019 debates that when the full details of the trial become known, it will be considered ‘one of the biggest medical scandals of the 21st century’. She acknowledged that 'the impact of the PACE trial on those with ME has been devastating'. The authors of the letter, supported by the 47 signatories, mostly psychologists with some psychiatrists, agree that Myalgic Encephalomyelitis (ME) is indeed ‘one of the biggest medical scandals of the 21st century’.

We hope that the letter, and the list of scientific references that support the statements, will provide a useful source of reference for psychologists.


Jenny Wilson
 

lenora

Senior Member
Messages
4,957
Thank-you @Countrygirl and the fine people who helped you put the above together.

We have a bad problem with doctors not believing us, but England has people who are actively dying because of the lack of basic things such as feeding them.

This is sad and I know most of us feel the same way about these patients. God bless you, the patients and their families for going through what you do. Yours, Lenora
 

Avenger

Senior Member
Messages
323
I fully
Thank you for writing this letter. A clear and realistic statement. In 2023 this is still necessary. After decades, the medical community continues to cling to outdated ideas. It is not only disgraceful but criminal behavior. Many lives have been destroyed by this disease. And the doctors who should help us let us down and make fun of this disease. Psychologists and doctors (not all!): shame on you!
I fully agree. Perhaps what we should be asking for is separation from the different Health Services and come together as a Union of patients to use our numbers to make changes such as asking our Governments to be treated at our own Hospitals and using only Doctors and Consultants with relevant interests and qualifications.

I do not know if we could ever obtain the necessary funding, but it may be the only way. Getting away from this toxic treatment that clearly makes both our mental and physical health worse, by Doctors who have no training at all in things like the microbiome.
 
Back