🧵Thread begins (20 tweets):
@sajidjavid @DHSCgovuk @NHSuk Today is the final day of #ME awareness month. Recent developments are most welcome. However, it is important that we are reminded of the long and torturous history of this illness & its impact on generations of patients:
#ME as an illness may well have existed for thousands of years - for as long as humans have possessed an evolving immune system. Anecdotal evidence begins to emerge more clearly during the 19th century eg. Florence Nightingale, post-Crimea.
The first documented outbreak of an ME-like illness occurred in 1934 at the Los Angeles County Hospital in California, USA. Since then, many hundreds, if not thousands, of similar incidents have been recorded from all over the world, representing an ongoing public health issue.
Many other notable outbreaks have been documented since 1934, eg. at the Royal Free Hospital in London in 1955/6 when the term "benign myalgic encephalomyelitis" was first coined in The Lancet ("benign" was finally dropped by the WHO in 2019) & at Lake Tahoe, Nevada, USA in 1984.
In 1988 the term "chronic fatigue syndrome/CFS" was substituted for/added to #ME causing widespread confusion/dilution of symptoms (ie +fatigue) which persists to this day. If characterised accurately #ME is NOT about fatigue. Fatigue is a normal response to exertion. #ME is not.
In 2021, the long overdue @NICEComms guideline for "ME/CFS" in England clarified that there is still no accepted diagnostic test, effective treatment or cure available to patients. There is only management of symptoms. After nearly 100 years, how on earth is this possible?
In addition to this, the @NICEComms guideline emphasised that patients have experienced prejudice, disbelief and been stigmatised. For many, this stretches over several decades.
In addition to this, I would argue that #ME patients have long been subjected to institutional abuse.
So, in 2022, how have we ended up here? The usual explanations are "challenging illness, lack of funding, lack of research, lack of resources" etc... Yes - but WHY? Sure, it's a difficult illness to understand/research but so are many others eg. HIV/AIDS, type 1 diabetes, MS etc.
Vigorous campaigning and strong political pressure on behalf of other illnesses eventually generated sufficient political will for increased funding, research & other resources leading to proper recognition and treatments. For HIV/AIDS, this took about 20 years. Not so with #ME.
The problematic nature of #ME meant that it was vulnerable to exploitation by various medical practitioners who adopted the psychosocial & behavioural illness models which became fashionable in the mid-late 20th century. They then translated them into treatments for #ME or "CFS".
This group developed a highly inappropriate model for #ME based on graded exercise therapy/GET & cognitive behavioural therapy/CBT.
GET frequently causes extreme harm to patients.
The ME-specific CBT model gaslights patients with: "You're not really ill, you only think you are".
This band of psychosocial/psychiatric-led practitioners evolved into a powerful lobby group who, along with their acolytes, developed a damaging and highly toxic culture around #ME and the patient community - particularly in the UK, but elsewhere too.
This toxic culture poisoned the well, thus obstructing urgently-needed progress in biomedical research, as well as preventing the development of appropriate support services and resources for #ME patients, both adults and children.
Professional reputations were built and had to be nurtured and maintained at all costs. The group's self-serving initiative has been bolstered by many media commentators stretching back over decades, and more recently with assistance from the @SMC_London which was set up in 2002.
As a result, this powerful lobby group came to dominate & control the #ME narrative. This has caused immeasurable reputational damage to the #ME community & further traumatised an already disenfranchised patient population. This damage & trauma has never been properly addressed.
Recap: 1934 ME first documented. 2022 no tests/treatment/cure, minimal research/resources (compare LC), physical harm actively caused to patients over decades (gross negligence), reputational damage to already traumatised international patient community + still no acknowledgment.
As I have already said, in 2015: "Whatever happens next is certainly too late for the millions of patients who have already died during the last eighty years. Most of them never had their illness validated nor were they treated with respect and compassion in their lifetimes".
Whilst both the recent statements by @sajidjavid and actions by the #ME orgs are most welcome, this painful history is not being acknowledged on a scale which properly reflects the appalling and now irreparable damage caused to the patient community over the last 50 years.
Acceptance of responsibility by the state is problematic but is the only appropriate & proportionate response to longstanding systemic injustice - Windrush/Thalidomide/contaminated blood products/Hillsborough/Stephen Lawrence...
A statutory public inquiry wd be a good first step.
And finally, a reminder of my quote from 2019:
“The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” valerieeliotsmith.com
End of thread. Thank you for reading.

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More from @ValeriEliotSmit

Dec 7, 2021
Thread begins/
17 Aug 2021: in a highly controversial move @NICEComms paused the final publication of the new guideline for the illness "ME/CFS"
@domsalisbury has now collated the results of FOI requests showing the insidious lobbying behind NICE's actions domsalisbury.github.io/mecfs/nice-mec…
It has become clear that this external interference was led by the psychiatric lobby. This vociferous lobby group has long controlled the narrative of "ME/CFS" causing unimaginable distress and damage to the patient community.
At this point, NICE should have refused to engage with this powerful lobby group, stuck with its own prescribed process and published as planned on 18 August 2021. It didn't. Instead, it capitulated, tore up its own manual and allowed this lobby group to manipulate the process.
Read 10 tweets
Aug 28, 2021
Thread on @NICEComms decision of 17 August to pause publication of new guideline on "ME/CFS". This thread sets out my view on current legal position.
Like all public bodies, @NICEComms has a wide discretion in how it operates. However, when the decision to pause was made, the process had been completed, signed off and the final document had been distributed to stakeholders.
Thus far, @NICEComms has failed to provide any evidence of exceptional circumstances in order to justify or clarify its decision.
Read 18 tweets

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