Something Chronic

@somethingchronic

Mostly bedbound by severe #ME/CFS #POTS #EDS #MCAS + more. Chronically hopeful for better days. Determined to fight against injustice so people with ME + Long Covid are treated with the same belief, respect + kindness as any other serious physical illness

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Bluesky

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Something Chronic@somethingchronic· May 5

2/2 Here’s a link to one of their papers which includes an extensive list of those involved. I’ve added this as a pic with the people I clocked involved in the conference highlighted – there may be more involved/attending. pubmed.ncbi.nlm.nih.gov/37740918/ #GreatestMEdicalScandal #MEAwarenessMonth

List of authors from the paper in this link: https://pubmed.ncbi.nlm.nih.gov/37740918/

It reads:
Oslo Chronic Fatigue Consortium;
Tomas Nordheim Alme 1
Anna Andreasson 2
Tarjei Tørre Asprusten 3
Anne Karen Bakken 4 5
Michael Bj Beadsworth 6
Birgitte Boye 7 8
Per Alf Brodal
Elias Myrstad Brodwall 1 10
Kjetil Gundro Brurberg ", Ingrid Bugge 12
Trudie Chalder 13
Reidar Due
Hege Randi Eriksen 14
Per Klausen Fink 15
Signe Agnes Flottorp 16 17
Egil Andreas Fors 18
Bård Fossli Jensen 19
Hans Petter Fundingsrud 20
Paul Garner 21, Lise Beier Havdal 1, Helene Helgeland 22
Henrik Børsting Jacobsen 23 24
Georg Espolin Johnson 25
Martin Jonsiö 26 27
, Hans Knoop 28
Live Landmark 29 24
, Gunvor Launes 30
Mats Lekander 31
, Hannah Linnros 32
Elin Lindsäter 33
, Helena Liira 34
Lina Linnestad 35
, Jon Håvard Loge 7
Peter Solvoll Lyby 36
, Sadaf Malik 1
Ulrik Fredrik Malt 37
, Trygve Moe 38
Anna-Karin Norlin 32
Maria Pedersen 1 10
Siv Elin Pignatiello 8
Charlotte Ulrikka Rask 39
Silje Endresen Reme 23 24
Gisle Roksund 40
, Markku Sainio 41
Michael Sharpe 42
Ruth Foseide Thorkildsen 43
Betty van Roy, Per Olav Vandvik 4 Henrik Vogt 45
Hedda Bratholm Wyller 46

Highlighted from the list are:
Paul Garner, Helena Liira, Silje Endresen Reme

Something Chronic@somethingchronic· Apr 28

Thank you @natashadevon.bsky.social for highlighting Wessely here – it’s so important people beyond the communities he’s hurt understand. #GreatestMEdicalScandal #SevereME #MEcfs

Quote screenshotted from Natasha Devon’s Substack (text in black on white background), which reads:

‘Health Secretary Wes Streeting has commissioned a review to whether mental illness and neurodivergence is being 'over-diagnosed' in the UK. One of the people tasked with determining this is Sir Simon Wessely, who is already on record saying he believes it is. In fact, Wes Streeting himself has made similar comments in the past. It doesn't seem like it'll be the most impartial piece of research ever done.’

Something Chronic@somethingchronic· Oct 26

‘Watching the far-right instigator Laurence Fox on the BBC’s Question Time, Grade said he cheered: “I thought, at last – a voice for those of us who are so sick of the intolerance … the woke brigade.”’ www.theguardian.com/commentisfree/article/2024/aug/06/riots-thuggery-14-years-tory-race-baiting

Something Chronic@somethingchronic· Oct 21

Moving #Mecfs protest at Federal Ministry of Research Oct 15 Berlin ‘… 100 body bags and a 50-meter-long construction fence with portraits of those affected. It visualizes how many severely affected people feel: buried alive.’ ‘… there is not a single approved medication due to a lack of funding.’

Close-up of rows of bags in front of the Federal Ministry of Research, Technology and Space (BMFTR). Each bag has a name on and a blue flower on top.

Rows of 100 body bags in front of the Federal Ministry of Research, Technology and Space (BMFTR) in Berlin

Something Chronic@somethingchronic· Oct 7

Posting this to help people understand #ME/CFS and Wessely and the BPS’ involvement with it since they’re now involved with #trans youth m.youtube.com/watch?v=RiwX...

Something Chronic@somethingchronic· Oct 7

George you might find this very interesting! Source: p.192 assets.publishing.service.gov.uk/media/67619f...

Page 192 of the Annual report
and accounts 2023 to 2024 from the UK Cabinet Office, reads:

4.1. Public Duty Cost Allowance

The Public Duty Cost Allowance was introduced to assist former Prime Ministers still active in public life. The Public Duty Cost Allowance is a reimbursement of incurred expenses for necessary office and secretarial costs arising from fulfilling public duties to a maximum of £115,000.

In addition to the Public Duty Cost Allowance paid, former Prime Ministers are entitled to claim a pension allowance to contribute towards the pension costs of their office staff. This pension allowance is limited to a maximum of 10% of their claimed Public Duty Cost Allowance.

The Rt Hon Sir John Major
2023-24 115,000
2022-23 115,000

The Rt Hon Sir Tony Blair
2023-24 115,000
2022-23 115,000

The Rt Hon Gordon Brown
2023-24 114,788
2022-23 114,627

The Rt Hon Lord David Cameron
2023-24 68,546 [superscript]11
2022-23 108,312

The Rt Hon Lady Theresa May
2023-24 113,475
2022-23 113,422

The Rt Hon Liz Truss
2023-24 101,332
2022-23 23,310

The Rt Hon Boris Johnson [superscript]12
2023-24 182,083

Staff pension costs
2023-24 26,121
2022-23 27,996

Total
2023-24 836,345
2022-23 617,667

[superscript]11 The Rt Hon Lord David Cameron stopped receiving the allowance when he was appointed the Secretary of State for Foreign, Commonwealth and Development Affairs on 13 November 2023.

[superscript]12 The Rt Hon Boris Johnson was eligible to claim the Public Duty Cost Allowance, however no claims were received in 2022 to 2023. Due to 2022 to 2023 being the first year of set up, the Cabinet Office has agreed to reimburse these costs in 2023 to 2024. All future office costs are to be claimed in-year with claims received by
31 March. 2022 to 2023 office costs amounted to £67,083.

Something Chronic@somethingchronic· Jul 25

The UK shouldn’t be going near this. Not only have Lockheed Martin contributed to genocide, they were a sponsor of Trump’s military parade so there is no question as to their ethics. (Image below is a screen grab from said parade)

Picture of the back of a saluting soldier’s head with a US flag in front of him. The lighting is golden as if it’s dawn or dusk. It’s a very patriotic looking image.

Over the top of all this is the words LOCKHEED MARTIN in all caps and italicised with a star symbol at the end and an elongated point of the star extending back over some of the letters of the word MARTIN.

Something Chronic@somethingchronic· Jul 17

@meresearchuk.bsky.social Just wondered if you’d seen this? It’s from 1989, which I know isn’t the era you’re currently covering, but thought I’d share since it’s so important for us to remember the BPS lobby has been devastating ME patients & research for over 35 years Source: @rfh1955.bsky.social

A letter written by typewriter on white paper with black ink, that has a watermark repeated over it saying ’Photo AR/CF 2011’. It reads:

from Dr. A. MELVIN RAMSAY

Tel: 01-647 9806

BRAMBLE HAW COTTAGE
40 WESTCROFT ROAD
CARSHALTON
SURREY
SM5 2TG

20th November 1989.

Dear Edith,
I feel very ashamed that I have not been able to reply to your letter in which you gave me the address of Dr. Margaret Macpherson and Dr. Margaret Hunt. I should have admitted long ago that I can
no longer cope with the amount of correspondence that pours in on me. I have told the Association that they must pay for secretarial assistance but how much longer will we have an Association. On Friday last a call was made for the resignation of the Chairman but he refused to vacate the chair. For many months we have been in difficulty by the influence exerted by a psychiatrist, Dr. Simon Wessly [sic] who has secured for himself the position of referee to the BMJ whose Assistant Editor has been strongly anti-ME and we cannot get anything published in British medical journals in our favour. Simon Wessly [sic] cuts right across my fundamental tenet of 'rest' for chronic M.E. cases and tries to get them admitted to Psychiatric Units where they are immediately put on vigorous exercise. Of course Professor E. Edwards in Liverpool has done the same for many years past. The enoucaging [sic] thing is that the 450 questionnaires I sent out have not been thoroughly sifted by Dr. E.G.Dowsett and are confirming my views on the aetiology of M.E. beyond anything I had expected and I am certain we shall win the day at the International Symposium to be held in Cambridge April 12th - 13th. Dr. Simon Wessly will have no say in the publication of those proceedings.
I will let you know what is going to happen about the Chairmanship of the M.E. Association.

Yours Sincerely,
Melvin

ps. I have not been ar [sic] all well but am slowly recovering again.

Something Chronic@somethingchronic· Jun 22

Vance is probably side-eyeing someone in the crowd he believes inferior to himself, but I like to think he’s doing it to Trump…

JD Vance, who some call a chubby fool, appears to be giving some serious side eye to Donald Trump, who some call the greatest asshole on earth. However it’s likely JD Vance is just throwing shade to someone in the crowd he feels is less than him.

Something Chronic@somethingchronic· Jun 7

Probably my phone being weird but I’m getting this warning when I click on the s4me link – just letting you know in case something’s up @scienceforme.bsky.social

Grey background with black writing and a red padlock warning symbol. Writing says:

This Connection Is Not Private

This website may be impersonating "www.s4me.info" to steal your personal or financial information. You should go back to the previous page.

Then it gives the following two options:
Show Details
Go Back

Something Chronic@somethingchronic· Jun 2

Ah yeah I blocked them after they trolled me too! Here’s the specific post I tagged you into and the reply from the account. (If you can’t see their name anymore they called themselves ME/CFS Research and their tag was @cfs_research … 1/2

Something Chronic@somethingchronic· May 23

Hachi… 😥🫣😭

Something Chronic@somethingchronic· May 23

Please sign and share if you’re able! *Demand NIH allocate $50 million to fund the ME/CFS Research Roadmap!* You can sign from any country and so you know for your energy, the form involves: • first name • surname • email • country bit.ly/MEcfsRoadmap #MEAction #MECFS #LongCovid #DisabilitySOS

Image of a road with signs that say trials, treatment, cure. Text: Sign the letter to the NIH director asking them to fund the ME/CFS Research Roadmap.

Something Chronic@somethingchronic· May 21

A light green solid background colour with a quotation in dark racing green and an author credit in violet purple. It reads:

"(ME/CFS patients) feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades."

Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University

Something Chronic@somethingchronic· May 21

Will ‘reframing my beliefs’ cure the muscle atrophy that #severeME has caused? Will it help me get downstairs in my home again after 2 years? Will it help Karen Gordon & @whitneydafoe.bsky.social? Why ignore 1000s of studies with irrefutable evidence #MECFS is physiological? @tessamunt.bsky.social

Picture of bare legs with socks just visible. The legs have significant muscle atrophy due to severe ME/CFS.

Something Chronic@somethingchronic· May 12

ME is one of the cruellest diseases you can possibly have. Most people think it’s as insignificant as having a cold. #May12 #MEAwarenessDay #StillTheSaME #StillSickStillFighting #ME #MECFS #SevereME #LongCovid #EndMEcfs #MEAction #MillionsMissing #GreatestMEdicalScandal #ThereForME #BerlinBuyers

Pink background with bright blue text saying: I haven’t been able to get downstairs in my own house for 2 years #SevereME

Something Chronic@somethingchronic· Feb 20

17-24 million people worldwide have ME/CFS. Many are bedbound, unable to tolerate light, sound and human contact. They can’t feed or toilet themselves. Some are forced into psychiatric wards because they’re told it’s all in their head. How can we encourage people to care what happens to us?

Brightly coloured quotation saying: “No one will protect what they don’t care about; and no one will care about what they have never experienced.” The person who this is attributed to is David Attenborough.

Something Chronic@somethingchronic· Feb 13

BBC report live from Royal Free Hospital – please share your NHS experiences of ME/CFS and LC with them. Contact details in attached picture www.bbc.co.uk/news/live/cw...? #ThereforME #MECFS #LongCovid