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Complaint dismissed: a charitable error or failure of due process?

January 10, 2022

This blog deals with issues relating to law and health, due process and civil society, as stated in the sub-heading above. 

I have lived with the discrete illness myalgic encephalomyelitis/ME (sometimes referred to, confusingly, as “ME/CFS”) since 1981. I work independently and I am not affiliated to any organisation or group in the ME community. I am a barrister. For more information see About.

This post is concerned primarily with due process, in relation to the handling of a complaint that I made to a major ME charity in the UK and my subsequent appeal to the Charity Commission.

Storm over City

Lightning strikes the city in 2014

It’s hard to believe how difficult it is to call out the conduct of some organisations in a supposedly democratic state which purports to have a strong civil society and robust civic institutions – but somehow that seems to be the case. I’m not giving up trying to find ways of doing it but I’m a bit stumped at the moment.

~ From an email I sent to a friend and ME advocate in December 2021.

The background

In August 2021, the international ME community was thrown into a state of consternation and confusion by an unprecedented “pause” in final publication of the new NICE guideline for “ME/CFS“. After a stressful and chaotic few months, the guideline was eventually published on 29 October 2021 with some ex post facto amendments.

The complaint

During the initial period of chaos immediately after the publication was “paused” by NICE (the English National Institute for Health and Care Excellence), I was in contact with various organisations and individuals. I was invited to contribute a group email discussion which was started by a senior member of an ME collaboration.

Arising from this group thread, I received two emails which were sent to me as the sole recipient. These are the emails which gave rise to my complaint. The sender was – and still is – a senior and longstanding official in his organisation, a major ME charity.

In September 2021, I made a formal complaint to the charity, summarised as follows:

“During the course of a group email exchange, Mr AB sent two emails which were inappropriate, threatening, intimidating and sexist. They were also intended to shut down legitimate discussion about the current situation regarding the “paused” publication of the NICE guideline for “ME/CFS” [contrary to a stated aim of the charity]. These actions call into question Mr AB’s fitness to continue in the role of X.” 

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The emails which are the subject of my complaint

The first email was sent in response to a blog post I had written about the current situation with, and contents of, the “paused” publication. The email read as follows:

So, three years of long days in committee for our ME/CFS experts and patients on the Guideline Group. Giving up their time and energy for people with ME
They change the use of CBT, stop CBT [sic] and improve the previous Guideline hugely………….and you dismiss their achievement as “rubbish”!
Clearly that makes a good blog grabber but I would have expected a more measured and thoughtful approach from a public commentator.

I replied, in an email which I sent separately from the group thread:

Thank you for your frank response, AB. I appreciate it. 

I share your frustration, having spent the last ten years wrecking my own health researching and writing, as well as providing information, advice and support, both publicly and privately, often to desperate individuals. I accept, like you, that there is a huge physical and emotional toll in doing this work.

I am also grateful to you for having the courtesy to reply directly to me. So far, as you know, I am only hearing from xxxxx in the group email. I am therefore unable to gauge reactions to my contributions or answer questions and address the very real concerns that group members will have. 

Incidentally, the full context of the quote you mentioned gives a rather different tone to what I said:

“It’s rubbish. It still contains far too much latitude for abuse of patients. However, it is less rubbish than the existing guideline from 2007. It is a significant improvement on that and it is the best we are going to get for the foreseeable future.”

Please feel free to share the contents of this email with any other members of the group.

Thank you again for getting in touch.

The following day I wrote another short blog post. [ETA: This post is entitled “A debt of gratitude“. In this post, I explained about the email I had received, acknowledged the work of the guideline committee and thanked them for their service.] Later that day, I received this response from Mr AB [ETA: Mr AB was not a member of the guideline committee]:

Hi Valerie

My response was not ‘frank’. It was extremely diplomatic.

When I do ‘frank’, you will know about it.

I did read carefully the parenthesis that you gave to the ‘rubbish’ comment but that did not. I feel, ameliorate the whole strident tone of your blog. Still, that is what blogs that seek readers seem to favour.

You might care to read that very old book “How to win friends and influence people“. That phrase has, regrettably, come into disrepute. But the book shows a deep understanding of  people and how you can influence them. Shouting at them rarely works.

I like the fable about the wind and the sun in their attempts to divest a man of his coat. Bluster from the wind, failed. But the warmth of the sun, worked.

I think the future for ME patients…..lies in research and the development of  medical education as to how we can be best treated. The new Guideline contains some positive advances in that area. We need to make sure they are brought into general practice.

I think we do that by using our expert knowledge of the illness coupled with our diplomatic skills.

AB

*******************************

The substance of the complaint

This is the relevant extract from my Statement of Complaint to the charity:

  1. At no time, have I ever had any contact with AB, other than during these exchanges.
  2. The two emails he sent are offensive per se. In other circumstances such as random or anonymous comments on social media, I would have ignored them. However, in the context of an email conversation between a group of professionals, this is unacceptable behaviour.
  3. AB’s conduct renders him unfit to continue as X of YZ [charity]………

ACTION REQUIRED IN RESPONSE TO THIS COMPLAINT

  1. A full, transparent and independent investigation should be carried out into AB’s fitness to continue in his current office as X at YZ [charity].

*******************************

The outcome

Two months later, I received a decision from the charity. An internal (not independent) investigation had been carried out and no further action would be taken in response to my complaint.

I appealed this decision to the Charity Commission (a rather cumbersome process). On 2 December, I received a response saying that the Commission would take no further action.

Where do I go from here?

Both decisions were as I had expected – a sad indictment in itself. However, given the nature of the emails I received, combined with the high-level position of trust held by the sender and his abuse of that position, I decided that the complaint should be made so that it stands as a matter of record.

The next stage in the process would be an application for judicial review of the Charity Commission’s refusal to take any action. However, I can say with some confidence that my complaint would be unlikely to meet the threshold of seriousness required for such an application to succeed.

Conclusion

Whilst this was very far from being amongst the worst examples of offensive online behaviour, nevertheless it will remain as a stain on the reputation of both a major ME charity and the sender of the emails. It also contains one of the most absurd instances of “mansplaining” that I’ve ever come across.

In failing to take any action, both the charity and the Charity Commission have tacitly condoned inappropriate conduct by an officeholder of an ME charity towards an ME patient-advocate.

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Photo credit ~ Valerie Eliot Smith 2014

6 Comments leave one →
  1. January 10, 2022 11:33

    For what it’s worth, I agree with you that the new guidelines are much better – and still pretty horrible as far as getting anything done to actually help those of us who are sick and have been that way for decades.

    ‘Less worse’ is not the same as ‘better.’

    Please, nobody point out that the Emperor seems to have thrown on a transparent plastic raincoat so he is technically no longer naked, but it doesn’t stop us from seeing and having to deal with the blatant abuse of people who are ill.

    And we’re still waiting for our apologies as well as treatment and cure.

    Like

  2. Christine Dunbar permalink
    January 11, 2022 17:17

    Dear Valerie

    it’s certainly a shocking response from someone you describe as a senior official in a major ME Charity.

    It’s also shocking that it is virtually impossible to to get redress for the many shortcomings or failures, which institutions serve up to us on a daily basis. Officials have become pusillanimous and Charities often self-serving.

    As you see, I am no lawyer, but is it impossible even to name the offending Charity? Can ‘people power’ make an impact on the invincible and entitled elites? I’m thinking of petitions which are achieving great results in some areas.

    Thank you for all your work re the Guidelines and I do hope you might have had some positive suggestions as to how this uneducated, ignorant, sexist, patronising, illiterate, un-selfaware, discourteous, disrespectful person might be held to account!

    With best wishes,

    Christine Dunbar

    >

    Like

    • January 12, 2022 10:23

      Dear Christine – thank you for your comment.
      I’m not planning to share the identity of the individual or the organisation. There has been a lot of interest in who it is but there are legal issues to be considered.
      However, I accept that there is a wider public interest here and I will keep the matter under review.
      Thank you for your interest and for taking the trouble to raise the matter here.
      Best wishes.

      Like

  3. genuineramsaymepatient permalink
    January 13, 2022 23:01

    The new Nice guidelines on ‘SEID’ criteria (ME/CFS) – ‘misdiagnosed’ ‘Chronic Fatigue Syndrome (CFS)’ patients seems to be a crude attempt at trying to capture anybody and everybody who DOES NOT have Myalgic Encephalomyelitis (M.E.) as defined by Melvin Ramsay, Elizabeth Dowsett, Byron Hyde, John Richardson, Irving Spurr. The only definitions that attempt to separate this illness is Frank Twisk’s, updated London Definition, Ramsays and more recently Hydes which is based on the disease not symptoms and repeatable onset diagnostics…….
    I fell ill with Enteroviral Rhombencephalitis and then Enteroviral Encephalomyelitis a year later and I can tell you from the experience of living this; the new CFS guideline Nice have produced is completely dangerous for Enteroviral patients. Often patient catch an enterovirus and then it persists and can lead to a whole manner of injuries and pathologies. Rhombencephalitis. Limbic Encephalitis. Meningoencephalitis. More likely to be confused for CFS, ME/CFS or SEID. Enteroviral Encephalomyelitis & Meningoencephalomyelitis. The latter two are M.E. But these all can lead to chronic disabilities. Brainstem Injury and Encephalomyelitis deffo will lead to chronic disability. The Nice produced guideline is idiotic for this patient group as can involve a persistent infection and a host of acute onset brain injuries. Both leading to brain, spinal cord, nervous system, vascular, cardiac or organ injury. None of this should be on a guideline with something named ME/CFS (no such thing), CFS (no such thing) or SEID (misdiagnosed patients, no such thing). M.E. is a thing…….

    Like

    • January 14, 2022 12:42

      Thank you for submitting your comment. We have published it in an edited form.
      The edited portions went beyond fair comment and therefore do not meet the standards required to appear on this blog.

      Like

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  1. Governance under scrutiny: identities revealed in charity complaint | valerieeliotsmith

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