Dr Rageshri Dhairyawan writes “Reflect, Collaborate and Listen” which examines why doctors don’t listen, and the urgent need to rebalance the power dynamic in the patient – doctor relationship.”
See the full article here in the Lancet – It is free to download (after registration, which is quite easy).
The abstract continues: “Anxieties about malingering or feigned illness are at least a thousand years old in the West”, argued public health ethicist Daniel S Goldberg in a paper on the history of “malingerers”. He gives several examples including Arnau de Vilanova who in the 13th century was so worried that patients were fooling him, by passing off other people’s urine samples as their own, that he wrote 19 pieces of advice for other physicians to spot the fraudulent. In this way, Goldberg shows how physicians have doubted the testimonies of patients for a very long time.
Please share – A very important campaign was launched on the evening of 29th August 2025 to help provide legal support for targeting improvements in medical care, thereby benefiting everyone with ME or Long Covid induced illness.
“Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness”
Find history, campaign details information and endorsements available on on the Crowd Justice site via the following link: justice4me.uk
Update 31/08/2025 – On a public facing Facebook comment, where some were discussing the nature of the campaign and potential legal cases, in answer to a question raised by an ME patient, Sarah Boothby (one of the endorsers of the campaign and mother of Maeve Boothby O’Neill, who tragically died from ME in October 2021 aged only 27) shared her understanding of what she believes #JusticeForME is intending (my bold, for emphasis, below):
“It is a case against the government, for neglecting to deliver a specialist health service in its Final Delivery Plan for ME/cfs.
Without Consultant led NHS specialist services everyone with #ME in England is denied access to the disability rights other medical conditions are given as granted and, if/when they need hospital treatment, no provision is made for the specialist nursing care demanded by the nature of the illness (hypersensitivies to all sensory stimuli that increase with #PEM). This automatically triggers the worst PEM ever – adding years of the most horrible symptoms to an already horrible illness. The campaign is to stop this neglect.”
As of this evening (31/08/2025), the campaign has astonishingly already received over £5,000 in pledges of first target of £6,000 within 48 hours of launch, with 28 days still remaining.
Full details and donations via the link here, taking you to Crowd Justice: justice4me.uk
A Meta Study, Comparing ME/CFS and Long Covid symptoms and quality of life. From the conclusions section:
Shared impact patterns were observed between the two illness cohorts. Profound impairments were consistently observed in self-perceptions of overall health status, physical health domains and ability to perform daily activities. Although only provided in one study, there were no significant differences in direct comparisons of HRQoL outcomes between pwME/CFS and pwPCC.
We have now taken legal advice, thanks to your donations, and instructed our lawyers to proceed with sending a letter before claim to the Department of Health and Social Care (DHSC). This does not mean there will be a claim (an application to the court for Judicial Review of the Final Delivery Plan for ME/cfs) it means there are inconsistencies within the Plan that make it vulnerable to legal challenge.
We doubt this vulnerability is what was intended in the drafting of the Plan. We know people with ME/cfs have had cross party political support for decades. We know hundreds of people contributed their knowledge, lived experience and expertise to developing the Plan, so we hope these snags will be resolved without a court hearing being necessary. People living with ME, and the NHS staff trying their best to deliver safe clinical care without clear, succinct, safe clinical guidance to follow, deserve nothing less.
If the reply from DHSC to our letter is not satisfactory, and the inconsistencies we have identified in the Final Delivery Plan persist, we must apply for Judical Review by 21 October at the latest.
At this stage, we cannot share with you the advice we have been given but we will explain everything the very first chance we get. Sorry if that’s frustrating; it is for us! If the case does come to court the legal arguments will be made public that way but we hope the DHSC will make the changes needed sooner. The changes needed are not huge, they are efficient, and they will not cost the NHS more money than is already being wasted on catastrophic mismanagement of ME.
This is a first step, made possible only by your generosity and the long history of injustice that got us here. We are honoroued by so many of you sharing your time, comments and money with us. We could not have got so far without you. We rely on your feedback on social media to be sure the aims of #Justice4ME reach the widest audience possible.
More updates will follow in the coming weeks, including additional endorsements and images on our homepage. Meanwhile, please keep on sharing our campaign with everyone you know, however unlikely! Since we met the initial fundraising target in our launch week, the campaign to raise the final third for this first phase will continue throughout October.
Thank you, thank you, thank you for helping make #Justice4ME a serious proposition. Let’s have our NHS knowing what to do about ME without doubts, indecision or delays – all over the UK, please.
