Katie Turner Profile picture
Sep 27, 2021 25 tweets 34 min read Read on X
telegraph.co.uk/health-fitness…

Just the title of this article says it all really

Making it all about Dr Fitzpatrick and detracting from the real issue whilst affecting opinion with sensational wording

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
>“250,000 people in Britain are estimated to have chronic fatigue”

That is for the SYNDROME (has hallmark symptom of PEM)

The SYMPTOM chronic fatigue (accompanying many illnesses) is different

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
“chronic fatigue, characterised by extreme tiredness and generally feeling unwell”

Gross understatement for cfSYNDROME

This chronic, fluctuating neurological condition affects many body systems

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
A Dr in 2021 should explain ME/CFS is characterised by the hallmark symptom of post exertional malaise = exacerbation of symptoms after exertion

Sufferers take days-months to recover, if at all

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Article does not mention post exertional malaise PEM

This symptom is why ME/CFS sufferers can’t tolerate graded exercise therapy.

It harms them - PACE trial discredited

meassociation.org.uk/2018/02/govern…

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
If Dr Fitzpatrick can’t discern between chronic fatigue (symptom) and Chronic Fatigue SYNDROME then he’s doing a disservice to not only his patients but society through articles on the ‘ME wars’

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
“psychological or physical therapies from which I had found many patients benefitted.”

He may well have seen some of his patients respond to GET & CBT if they had chronic fatigue, the SYMPTOM 🤦🏻‍♀️

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Re. GET: “The most widely used intervention”

Just because something is widely used doesn’t:

- make it a good option

- mean it should stay

Lobotomies & blood letting used to be widely done too

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Re. GET: “the new draft claims ‘a lack of evidence for effectiveness’”

A rigorous process using best available research led to decision to remove GET

Not a ‘claim’ 🤦🏻‍♀️

Again, symptom v syndrome

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
“Patients with chronic fatigue may have been treated badly by the medical establishment in the past.”

“MAY”?!

“PAST”?!

Sir, quite frankly with articles like yours you are part of the problem

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Weak attempt to persuade patients they’ve been “ill-served by the ME campaigns” by stating that Drs (i.e. those who supported GET) left the field due to being targeted by ME/CFS campaigners

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
The PACE trial has been debunked. GET is harmful to ME/CFS patients therefore they are safer without the interference of any researcher refusing to see flaws in the PACE trial

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
A small number of campaigners may have become passionate in their actions however the psych lobby have a history of strategising with the SMC to achieve a desired result

virology.ws/2016/02/01/tri…

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Dr Fitzpatrick complains some scientists received litigations and FOI requests but fails to clarify this is due to GET studies being of low and very low quality, affecting treatment guidelines

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
ME/CFS patients were harmed due to the results of those studies affecting 2007 NICE guidelines

Patients & the public have a right to the information

PACE trial = scientific and financial fraud

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Dr Sarah Myhill has been campaigning for years to hold the authors of the damaging PACE trial to account:

change.org/p/the-national… (from here there is a link to the timeline of complaint to GMC)

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Admitting sufferers of an energy illness may have been mistreated then going on in the next breath to moan about the “energies” of scientists & clinicians shows how out of touch Dr Fitzpatrick is

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Patients who are STILL being mistreated (by the medical establishment, the media, society in general to name a few) are being gaslit to feel bad about standing up for themselves.

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Scientists have spent a lot of energy working on GET so pwME should what? Not campaign? Be grateful for a treatment?

No. If a treatment is more harmful than helpful then it is not a treatment.

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Much Wessely glorification - now being “both a Professor and a Knight of the realm” doesn’t impress the ME/CFS community who know the truth of his career

Obviously used to influence readers

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
The fact Wessely is involved in long covid should fill that community with dread

medium.com/the-establishm…

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Judging from Dr Fitzpatrick’s 2002 article it’s easy to see why pwME were cross & 19 years later he’s not gained awareness on why he ‘became a target’, so let’s dissect:

theguardian.com/education/2002…

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
GP, not ME/CFS specialist, with a seeming misunderstanding between chronic fatigue (symptom) & chronic fatigue SYNDROME

Open gaslighting “I can’t recall ever saying that I don’t believe in ME”

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Uneasiness: Drs being “liable for disciplinary action” for not believing in a disease

Sir: “mass hysteria” diagnosis made 15 years after event by psychiatrists who didn’t see the FEMALE patients

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
“Exhaustive researches have failed to confirm…symptoms are the result of some infectious agent or immunological disorder”

To say ‘exhaustive’ is laughable & was extremely misleading to readers

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk

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More from @Turner12341

Sep 25, 2021
The Lion & The Donkey (fable) is a good lesson in general though it does not translate to issues where donkeys are in power, in which case it’s dangerous to ignore them 1

fizikamind.in/blog/dont-argu…

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk Image
In the NICE debacle:

Lion = NICE

Donkey = opposition to new guidelines (small but powerful groups)

Tiger = supporters of new guidelines

Grass = GET: Green = harmful, blue = helpful

2

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
In the NICE debacle donkeys have had influence over the media and therefore the public for years:

mrtopple.com/2019/03/18/the…

3

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Read 5 tweets
Sep 25, 2021
“Health and well-being are a top priority for us”

Will you keep this promise to your staff when you’re failing patients?

2007 guidelines STILL recommend GET

New guidelines inexplicably paused

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
“we understand the importance of creating a respectful, supportive, and transparent environment for all our employees.”

It’s curious you don’t understand the same for the ME/CFS community.

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
“Health and well-being are a top priority for us because we understand the importance of creating a respectful, supportive, and transparent environment.”

H is left out of your acronym 😑

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Read 9 tweets

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