Please help save Carla's life by joining in a Twitter storm 11am -1pm UK time on Thursday 18th April 2024

[Rufous McKinney]

To do a protest at the hospital by gathering keyboard warriors and potentially disrupt medical treatment and care for the entire hospital without knowing both sides of the story sounds irresponsible to me.

I would hope somebody would care enough to hold up a sign out front of a hospital and stick up for me.

Or toss a can of soup in the lobby, maybe at some statement of the wall, about how dedicated they are to patient care.

 

[hapl808]

Someone posted this in the thread. It has her parents talking about the situation. Unless there is serious proof that Carla doesn't want her parents involved in her care, then why aren't they being taken seriously?

Then there are some other articles - no idea if they're accurate or not.

https://www.thecanary.co/uk/analysis/2024/04/16/severe-me-carla-west-middlesex/

But since NHS has a terrible track record for ME/CFS, people like Sharpe and Weasely involved, etc - they are guilty until proven innocent at this point. Sad, but I've seen no evidence that they understand moderate-severe ME/CFS is incredibly debilitating, and no evidence they understand their casual treatments could permanently destroy the health of their patients.

If there's more information that disputes any of this, I'd be interested to see it - but at this point these stories are quite common. Is there anyone in the UK on this forum that has had a good experience being hospitalized for ME/CFS symptoms?

 

[Booble]

Someone posted this in the thread. It has her parents talking about the situation. Unless there is serious proof that Carla doesn't want her parents involved in her care, then why aren't they being taken seriously?

Then there are some other articles - no idea if they're accurate or not.

https://www.thecanary.co/uk/analysis/2024/04/16/severe-me-carla-west-middlesex/

But since NHS has a terrible track record for ME/CFS, people like Sharpe and Weasely involved, etc - they are guilty until proven innocent at this point. Sad, but I've seen no evidence that they understand moderate-severe ME/CFS is incredibly debilitating, and no evidence they understand their casual treatments could permanently destroy the health of their patients.

If there's more information that disputes any of this, I'd be interested to see it - but at this point these stories are quite common. Is there anyone in the UK on this forum that has had a good experience being hospitalized for ME/CFS symptoms?

Thanks for the additional information.

Edited to add: Eww, a bit of an anti-semitic rag that website...

 

[Countrygirl]

Someone posted this in the thread. It has her parents talking about the situation. Unless there is serious proof that Carla doesn't want her parents involved in her care, then why aren't they being taken seriously?

Then there are some other articles - no idea if they're accurate or not.

https://www.thecanary.co/uk/analysis/2024/04/16/severe-me-carla-west-middlesex/

But since NHS has a terrible track record for ME/CFS, people like Sharpe and Weasely involved, etc - they are guilty until proven innocent at this point. Sad, but I've seen no evidence that they understand moderate-severe ME/CFS is incredibly debilitating, and no evidence they understand their casual treatments could permanently destroy the health of their patients.

If there's more information that disputes any of this, I'd be interested to see it - but at this point these stories are quite common. Is there anyone in the UK on this forum that has had a good experience being hospitalized for ME/CFS symptoms?

Yes, I have and it was a horrible and abusive experience. I have also been closely involved with many such cases over the last 35 years, some which have resulted in death. I also co-ordinate closely with the two leading ME consultants in the UK (one regularly runs ME and Long Covid clinics in my home) and I can assure you that these cases are horrific and genuine.

 

[hapl808]

Edited to add: Eww, a bit of an anti-semitic rag that website...

Yep, I don't disagree - plenty of that going around.

Sadly, the couple articles they've done on MECFS are some of the few that seem to cover the disease accurately. Other than Ed Yong, there have been few mainstream journalists who cover the disease, and even fewer who write about specific cases.

I will freely admit that verifying all the facts of any one case is very difficult - this is how we ended up in a war in Iraq. That said, there are certain areas where we can make assumptions and be right most of the time.

I'm not advocating that these physicians go to jail. I'm advocating that the systems need to change, because 99% of physicians (and honestly most MECFS patients) don't understand the chasm between severe and even moderate, and where most people are - quite mild.

For years I thought I was severe because I crashed regularly, couldn't do strenuous exercise or sports anymore, got sick every week. I had zero clue that was mild, and the stories I read here about severe or even moderate people sounded like mental illness to me (looking at a 'screen' crashes you?), because it was so different from what I was experiencing. Then I slowly got worse, and because it happened over a two year period I got to enjoy the slower panic as I lost function in every area of my life.

@SpinachHands is talking in another thread about how they are handling their partner's doctor appointment (they are so lucky to have a partner like that). Yet it can backfire, because now maybe the doctor thinks they are abusing the partner because they cannot imagine how someone could be sick enough to not do a telehealth call. My video appointments crash me for a good week, but I consider myself only moderate-severe, because I'm able to sit at a desk and do the call, even if I pay for it.

So as I've said, I fully sympathize with the challenges doctors face - but our situation is urgent and there is zero sense of urgency from medicine. There's usually no 'other side' to this - it's not a political issue. The only other side is even with the best of intentions, this is a challenging disease to treat and it's not fun for the patient or provider. Most providers prefer not to deal with it at all - it's much more fun to blame mental illness and refer them to psych.

They will keep torturing us until they learn to stop doing this.

 

[Rufous McKinney]

I can assure you that these cases are horrific and genuine.

I"m sorry you have suffered so much from this direct experience and witnessing this physical and emotional abuse. Your commitment to helping others suffering- I thank you for doing this.

 

[Countrygirl]

I"m sorry you have suffered so much from this direct experience and witnessing this physical and emotional abuse. Your commitment to helping others suffering- I thank you for doing this.

Thanks, @Rufous McKinney . It is very draining, and frustrating.............and makes me v. angry to witness this cruelty that almost, certainly in Millie's case, borders on sadism.

 

[Countrygirl]

Carla's MP at West Middlesex hospital. She visited Carla, spoke at length with us, Pierre & Caroline about the situation & has written to the hospital CEO expressing her concern. Please thank Seema for her support

#SaveCarlasLife Late on Saturday we met with@SeemaMalhotra

 

[Countrygirl]

https://twitter.com/i/web/status/1783086033376022758

This is a very distressing video so take care!

Carla's O2 fell to 72% last night and dropped further today. However, they have removed the machine so that her levels cannot be reported to social media.

Apparently, the doctors say they gave her a 'new' medication and think they may have overdosed her, resulting in the reaction you see on the video.

 

[Countrygirl]

Trigger warning - upsetting footage and audio (screams) of a severe ME patient.
POSTING ON BEHALF OF THE CHRONIC COLLABORATION.
PLEASE SHARE FAR AND WIDE ACROSS FACEBOOK!
Carla has severe MECFS and being kept in West Middlesex Hospital where staff are treating it as a psychosomatic issue and refusing to follow NICE guidelines.
‘We should add that after the SpO2 reading dropped to 71% (even though the nurse said Carla was 'deliberately' making noises like she was struggling to breathe) the hospital then removed the obvs machine entirely’
- - -
Don't. Look. Away. #SaveCarlasLife
CW: distressing
Videos from last night. Carla is worse today.
We are watching the NHS kill an #MEcfs patient in real time.
We're struggling to get anyone to help. So, we want everyone here at 8pm for #MEAwarenessHour. We need to act.
https://x.com/thechroniccolab/status/1783086033376022758...

 

[Countrygirl]

https://twitter.com/i/web/status/1783215961102839830

DON'T. LOOK. AWAY. #SaveCarlasLife #MEAwarenessHour Please meet Pierre, Carla's father. We cannot overstate how distraught he is by what is happening to his daughter. However, he wanted to speak to everyone directly. Please watch & share widely. She is running out of time .

 

[Countrygirl]

On May 1st at 4.30 pm, Sir Sajid Javid is to lead a debate on research into ME in Westminster Hall, Houses of Parliament, Lpndon.

Steve Topple has written the open letter (below) to Sir Sajid Javid for us all to sign. (This can be signed by anyone from all countries)

Please consider adding your name and don't forget to acknowledge the email or your name won't register.

Thank you!

https://openletter.earth/sajid-javi...ases-in-your-westminster-hall-debate-a0d1b905

26 April 2024
Sajid Javid: please raise very severe and severe ME cases in your Westminster Hall debate

Dear Sajid,

We welcome you leading a Westminster Hall debate on myalgic encephalomyelitis (ME) on Wednesday 1 May, and also thank you for your work on this devastating illness during your time as secretary of state for health and social care.

As a community, we are collectively extremely distressed by the situation of several ME patients in NHS hospitals.

Millie, Carla, and Karen - while being individual cases - are all currently being neglected, mistreated, and in some instances abused by medical professionals supposedly charged with their care.

Millie has been placed under Deprivation of Liberty Safeguarding (DoLS) measures - with medical professionals not believing her ME diagnosis.

Carla is in a similar situation - with the hospital's treatment leading to her having seizures for over two weeks, left untreated.

Karen has been plagued by the NHS refusing to treat her ME seriously - now forced into hospital which will make her even worse.

The common denominators in these women's cases is medical professionals refusing to believe their ME diagnoses or not following NICE guidelines, and then in all cases consequently worsening their health - to the point where they are at severe risk of potentially dying. This is thanks to decades of psychologisation of ME by a small but influential and vocal group of medical professionals - which has ended up toxifying how far too many people with ME are treated by the state and society.

Yet despite these three women having ME diagnoses, they and their families have been at best failed, and at worst subject to severe malpractice by the NHS.

Tragically, it is highly likely that Millie, Carla, and Karen's cases are just the tip of the iceberg. They only came to light because of social media, their families reaching our for help, and the hard work of chronic illness communities; people who are already sick themselves.

Plus, the way the NHS has treated these cases then makes other people living with ME feel unsafe in our public health service.

Moreover, people living with ME are dying. In January, one woman from the UK went to Dignitas to end her own life. In March, another woman living with ME died. Currently, an inquest into the death of Maeve Boothby-O'Neill is ongoing.

We feel that ME is not getting the priority focus from any area of government that it so desperately needs. We urge you to raise Millie, Carla, and Karen's cases during the Westminster Hall debate, along with how they have been treated - and reflect the lived reality of how ME patients feel about the NHS.

Yours gratefully,

The ME community, the Chronic Collaboration, and their allies.

 

[Countrygirl]

https://twitter.com/TheChronic.../status/1783929319275769929

Update on Carla and Millie and the general situation

 

[Countrygirl]

​

Conversation​

@TheChronicCollaboration
@TheChronicColab

UPDATE: #SaveCarlasLife - it seems the hospital are finally doing something positive - but still not quite enough - plus #BringMillieHome FYI transcript of the video in reply below:

https://twitter.com/i/web/status/1785026943881978199

#SaveCarlasLife #BringMillieHome transcript of the above video: Hi everyone. So, as you would have seen on social media, I went and saw Carla and Pierre at hospital this afternoon. I went and saw Carla. She was unconscious, sleeping. It was difficult to say which, actually. She looked quite peaceful. So, the latest is that the hospital have agreed to perform, finally, an MRI, CT. They're doing a lumbar puncture and an EEG in relation to the loss of consciousness and seizures that Carla keeps having. These, they're planning to do them tomorrow. Actually, in line with NICE guidelines, in terms of their planning these procedures in advance. They wanted to do them under general anaesthetic because of the fact that Carla's very severe ME, obviously, would not tolerate these procedures. Otherwise, they have been written to advising that general anaesthetic might not, the normal way of doing it, might not be the best way forward. They have been advised by an ME expert to proceed in a slightly different way. Apparently, the hospital took this on board and wrote it onto Carla's file, which is progress in itself. However, this is still not addressing the issue of the fact that Carla also needs a PET and SPECT scan. So, progress, tentative progress, but still other things need doing. So, Carla's mum, Caroline, is kind of at the end of her tether, really distressed about the situation and had to come away today. Pierre is looking tired. I was quite worried about him. Actually, I spent about two hours with him today, just kind of talking. He was showing me photographs of before, which was nice in some respects. So, yeah, that's supposedly happening tomorrow. So, I will keep in touch.

Nicola's feeling better as well, thank you, getting there, blooming POTS. But yeah, we will keep you updated with that. And obviously, we have the website, our website, launching on Wednesday. With regards to Millie, there's nothing that the family didn't ask their social media representative to put out today. We don't have anything to add on top of that. Again, I spoke to Lisa and Abby actually this morning for about 45 minutes, probably, and caught up with everything that's going on there. So, all right.

 

[hapl808]

Hope this is okay - I have a lot of trouble reading longer paragraphs so I often put stuff through AI to shorten it or break it up. Usual warnings that AI can sometimes make small mistakes, but since I figure others here may have the same issue but be following her case, here is a condensed version:

I visited Carla and Pierre in the hospital today. Carla was either sleeping or unconscious—it was hard to tell, but she appeared peaceful. The hospital has finally agreed to perform an MRI, CT scan, lumbar puncture, and EEG tomorrow to address her recurrent seizures and loss of consciousness, following NICE guidelines. They plan to use general anesthesia, considering Carla's severe ME, although an ME expert has suggested a different approach. This advice has been noted in Carla's medical file, marking some progress, though she still requires a PET and SPECT scan.

Caroline, Carla's mother, is extremely distressed by the situation and had to leave today. Pierre seems very tired; I spent a couple of hours with him, reminiscing over old photographs. I will keep you updated on these developments.

In other news, Nicola is recovering from her POTS symptoms. Thank you for your concern. We also have our website launch this Wednesday. Regarding Millie, there are no updates beyond what has been shared on social media. I spoke with Lisa and Abby this morning to catch up on their situation. That's all for now.

 

[Countrygirl]

Update from Pierre, Carla's father:

Pierre Naoum

@PCCC90

Until this minute they didn’t do any of the promises procedures, every single day they promise us tomorrow will make her the procedures,and I have to cancel my appointments,and the next day come, then I find out everything have been cancelled, every time they give me same excuse


12:31 PM · May 1, 2024
·
1,064
Views

 

[Countrygirl]

https://twitter.com/i/web/status/1785656048482718071

Psychiatrists are some of the most narcissistic, toxic people going. It's all suddenly kicked off today #ExposeMENow WATCH:



Update on Carla (transcript of my video from a short while ago) #SaveCarlasLife
Hi everyone, okay so we have an update about Carla. They did not end up doing the MRI, CT and EEG yesterday as promised. They were supposed to be doing it today, but the family were told early this morning that that was now not going ahead.

Suddenly in the past 40 minutes the liaison psychiatrist has got back involved again because West Middlesex Hospital also wanted to do a lumbar puncture on Carla. Now Carla's ME specialist doctor has correctly advised that they should not do this procedure on a very severe ME patient, not least because if you know anything or the basics about ME you would know that there is a risk of a cerebral spinal fluid leak which could be catastrophic in Carla's situation for her. So that was advised.

Carla did not consent to the procedure. Bear in mind she is not, we have discovered, under full deprivation of liberty safeguarding at this point. She did not consent to the procedure.
The family did not consent to the procedure. So, the liaison psychiatrist has suddenly got back involved, is even ignoring the gastroenterologist who runs the ward who said that they are not concerned whether this is done or not and is now saying that they are going to assess Carla for capacity because of the fact she is refusing this procedure and her family are refusing this procedure. Hopefully we might be able to nip this in the bud because we have a barrister and a legal team in place behind the scenes to move very quickly for these eventualities.

However, I am waiting for them to call me back. So, we are going to stop this safeguarding as soon as we can, just stop it in its tracks. We will keep you updated.

 

[Countrygirl]

https://twitter.com/i/web/status/1785682371527811519

Transcript for above video: Okay, so update. After we threatened the hospital with a barrister, suddenly they assess her and Carla has capacity and they back off from doing the lumbar puncture for now. There's going to be a meeting tomorrow with 12 different consultants and specialisms also to discuss whether or not they can do the PET scan that Carla's ME specialist suggested. So, so far, right, yep, capacity assessment and safeguarding has stopped on threat of barrister, um, which is quite interesting in itself. However, obviously, now that psychiatry is sniffing around, we need to tread carefully and take affirmative action very quickly. We will have more details on that tonight around the same time as we are launching our website. So yeah, please make sure you're around for ME awareness hour tonight, 8pm British summertime BST. Okay.