Dear Society of Occupational Medicine, will you listen to people with M.E. and Long Covid?

Concern at the mass blocking by SOM...

We are hosting writer Kirstie Sivapalan this week who wrote an inspiring open letter to the Society of Occupational Medicine.

Patients with M.E. and Long Covid were blocked by the twitter account @SOMCEO for their valid concern regarding the awarding of honorary membership to Sir Simon Wessely. A controversial figure in the medical world.

Suppressing important patient testimony is not in the interest of common dialogue or medical discourse. We are concerned at the level of influence Wessely exerted in this act of institutional epistemic harm. Were SOM Wesslied?

This counters the self-stated efforts of SOM in their commitment to Inclusion & Diversity. Surely the concerns of the disabled voice need to be listened too?

The SOM is committed to actively and openly supporting and promoting equality, diversity, and inclusion. Its values, agreed for its 2017-19 strategy, is it aims to be Democratic, Ethical, Inclusive, Approachable, Collaborative, Knowledgeable, Collegiate, Cost, Effective, and Professional with a focus on Continuous Improvement.

In response a small team of people came together to work on an open letter written by Kirstie Sivapalan. If you want add your voice you can add your name to our open letter through this form or…

Help us tell them that we have a right to be heard. It is time that the negative PR campaign against people with ME/CFS is stopped.

Image Credit: Lea Aring and Deutsche Gesellschaft for ME/CFS

OPEN LETTER

Dr Shriti Pattani
President and Chair 
Society of Occupational Medicine 
2 St Andrews Place 
London
NW1 4LB 
22nd June 2023

Re: Blocking of Twitter accounts of people with M.E. and Long Covid by @SOMCEO

Dear Dr Pattani and members of the Board, 

I am writing to you to express my dismay and concern regarding the actions of your CEO, Nick Pahl, or if different, the decision maker regarding your social media engagement policy. 

A tweet was posted on June 15th (image above) regarding the awarding of Honorary Membership of your society to Sir Simon Wessely . This tweet raised significant and very valid concern and distress amongst Twitter users who live with the condition Myalgic Encephalomyelitis (otherwise abbreviated to M.E. or ME/CFS), which is being shown in recent peer-reviewed research to share devastating, life-changing symptoms with Long Covid.

However, my letter to you is not to highlight concerns of your awarding Sir Simon with honorary membership, which may be a case for others, but it is to express to you my dismay at the actions of your CEO, namely, the blanket blocking of anyone who commented on this award. 

It is important, first, to understand the context of the reaction to this post by people with M.E. and Long Covid. Sir Simon is a controversial figure within the M.E. community, and his involvement in treatments which have caused and perpetuated patient harm have been well documented. His attitude and, as we now know, mistaken belief that M.E. can be treated with CBT, as well as his support of the PACE trial of Graded Exercise Therapy, which he once described as a "genuinely beautiful trial", are considered to have contributed to patients with M.E. feeling less understood, ignored and in some cases, disbelieved and forced into exertion by health care professionals. Some have severely relapsed as a result and there is a question to be answered whether his work has been so influential that it has impacted the funding of much needed biomedical research into the physiopathology of M.E. and now, it’s sister post-infectious disease, Long Covid. 

Sir Simon himself has said, when asked about the most recent NICE guidelines on ME/CFS:

"If even one patient feels that they are not being taken seriously, there is more work to be done."  

I would argue that blocking patients for expressing their views in this manner is an example of not taking patients seriously, and suppressing the views of the people whose lived experience of this disease and the consequences of harmful treatment strategies indicates that, indeed, there is much more work to be done. 

To illustrate the breadth of informed opinions expressed by patients with M.E. and Long Covid on this Twitter post, I want to take a moment to detail the type of comments that were made: 

-Sharing frustration towards a person they believe has promoted harmful beliefs that negatively impacted the possibility of recovery from this disease 

-Sharing the latest peer-reviewed research findings regarding M.E./Long Covid

-Providing links to scientific and medical articles critical of Sir Simon’s work and that of his colleagues 

-Asking questions as to why Sir Simon has been awarded this accolade given documented history of his beliefs about how M.E. should be treated

-Commenting on the blocking of patients with M.E. and organising a letter to the Board to outline concerns 

In the spirit of open and transparent dialogue between organisations representing medical professionals on the one hand, and the patient community on the other, none of these actions warranted the disproportionate action of blocking. In fact, someone with a good understanding of community engagement would see how useful the comments were as community feedback, even consider them valuable patient intelligence as to the work that was still needed to engender further trust and confidence in Occupational Medicine. On a fundamental level, what is needed, instead of the mass exclusion of patient voices, is that our experiences are listened to and responded to with compassion and understanding. 

None of the people, including myself, who commented on the post are ‘internet trolls’, nor are we "activists" - a demeaning slur levied at us by many of Sir Simon and his associates to dismiss our concerns with very little to no evidence. We are people who once held jobs in the workplace, some at very high levels like you, doing similar work to you, who have either had to reduce our workload or give up altogether. People with M.E. and any other debilitating disease have so much to offer the world. We strive to be taken seriously and we call for appropriate treatment, as evidenced in the latest NICE guidelines. Some are also currently accessing Occupational Health (OH) services and others have accessed them in the past or will in the future. We have a right to be heard and, I would argue, organisations like yours have both a legal duty and a moral duty to hear us and treat our expressed views and experiences with respect and dignity. 

Image credit: Lea Aring and Deutsche Gesellschaft for ME/CFS

M.E ranges from mild to very severe. When my condition was mild I worked in HR and had frequent interactions with OH services. I was able to see the support they offered, and witness their limitations too. I know from others that you and organisations like yours constantly strive to improve your understanding of conditions such as M.E. and Long Covid; I welcome your Long Covid guidelines, and your inclusion of patients in creating them. I note too that you place emphasis on Diversity and Inclusion. From my experience in working in HR over 20 years including senior roles, I would be advising you, as the manager of this individual, that the blanket blocking of people with a disabling chronic illness, without valid reason, was exclusionary. On a practical level, I would also advise you that the action would create further mistrust in the M.E. and Long Covid community of health care professionals, such as your members, which will only serve to make their jobs harder and the whole process more protracted and unnecessarily difficult. Moreover, I would be concerned that the action of blanket blocking without consideration or comment belies an unhelpful and dangerous attitude towards people with M.E. and Long Covid. If this comes from someone at the top of your organisation, this is likely to bleed into your culture and perhaps to the members themselves. Attitudes like this, conscious or unconscious, are corrosive to any organisation and can impact the provision of services and support to much needed communities. They may even further act to weaken the Long Covid guidelines your organisation has put in place. 

If you need further evidence to assist you in your exploration of this matter, please feel free to read the comments for yourself. As Twitter is public all our comments and our discussion regarding drafting this letter are there for you to see. I have added links below to assist you as well as the references that back up all I have expressed in this letter. You may also find useful two additional threads for context: the careers that people with M.E. and Long Covid have had to reduce or give up, and whether they are currently or have accessed OH services. This thread includes both positive and negative experiences of OH from the point of view of people with M.E and Long Covid. 

I must also inform you that I and others in our community have asked our charities to write to you to express their concern, and I will be forwarding a copy of this letter as well as publishing it as an open letter on social media for full transparency. However, I would hope that this situation can be resolved with an apology to those blocked and a thoughtful discussion can be initiated with people in our community who have legitimate grievances with Sir Simon and those who followed his work. I don't ask you to agree with their grievances but I do ask you to use compassion and empathy to seek to understand their lived experience.

I hope you spend some time and energy on reading this letter thoroughly and understanding my intention from a place of empathy and awareness. Others and I have prioritised our own energy to put this together and send it to you - energy which is limited given our current baselines of functional ability. I look forward to hearing from you further.   

Yours sincerely 

Kirstie Sivapalan 

On behalf of people in the M.E. and Long Covid community who have, through an on-line form, added their signatures to this Open Letter through this form