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New Video: Very Severe #MECFS is a debilitating condition causing profound suffering and life threatening symptoms. They are bedridden and dependent on care. Most doctors have had no training; leading to misdiagnosis, Inappropriate management and medical neglect.

Adam

8,196 subscribers

134,035 görüntüleme • 3 yıl önce •via X (Twitter)

Sağlık & İyilik Haberler & Politika Eğitim #MECFS

Anya Rossi• Live Now

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Adam profil fotoğrafı

Adam3 yıl önce

Some people with Very Severe #MECFS may not be able to ingest food and need to be tube fed. This case study highlights 5 patients with where the delay of tube feeding led to life threatening malnutrition.

Adam profil fotoğrafı

Adam3 yıl önce

There have been two recent high profile cases of patients being refused nutritional support in the UK.

Adam profil fotoğrafı

Adam3 yıl önce

And there is an inquest into the death of a person with #MECFS due to medical neglect that is currently ongoing.

Adam profil fotoğrafı

Adam3 yıl önce

The NICE Guideline has more info about Severe and Very Severe ME/CFS.

Adam profil fotoğrafı

Adam3 yıl önce

Video (2mins 20) also on YouTube. Very Severe #MECFS is a debilitating condition causing profound suffering and life-threatening symptoms. Most doctors have had no training; leading to misdiagnosis, Inappropriate management and medical neglect.

The Liberation Project profil fotoğrafı

The Liberation Project1 yıl önce

𝐀 𝐇𝐞𝐚𝐥𝐭𝐡 𝐈𝐧𝐬𝐮𝐫𝐚𝐧𝐜𝐞 𝐂𝐄𝐎 𝐢𝐬 𝐍𝐨𝐭 𝐓𝐡𝐞 ‘𝑾𝒐𝒓𝒌𝒊𝒏𝒈 𝑪𝒍𝒂𝒔𝒔 𝑯𝒆𝒓𝒐’ Americans of all political affiliation suddenly woke up realize they agree that their healthcare system is inherently cruel and produces unnecessary misery. ★ NEW ARTICLE ⬇️

Tracey Burgess profil fotoğrafı

Tracey Burgess3 yıl önce

Thank you Adam. It's the weirdest & most horrifying situation, for people 'living' with severe/very severe ME/CFS, that they're ignored by most medical professionals & most of society. The truth about their woeful neglect, will become known but it's so painfully slow. 💙

Adam profil fotoğrafı

Adam3 yıl önce

💯 it's absolutely appalling.

Carole Bruce profil fotoğrafı

Carole Bruce3 yıl önce

Thank you Adam. I hope this is seen by millions and action into research, treatment options and real help follows.

Adam profil fotoğrafı

Adam3 yıl önce

Something really needs to change.

Lizzy H profil fotoğrafı

Lizzy H3 yıl önce

Brilliant video💙 thank you. My heart breaks seeing photos of Merryn, I really miss her. I wish everyone saw this and it was shown in parliament and Medical education settings.

Adam profil fotoğrafı

Adam3 yıl önce

Thanks Lizzy. Yes It's terribly sad 💔 I really hope this helps educate even just a few HPs.

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Highlights from today's BBC Breakfast Interview with @BinitaKane and Sarah Boothby (sarah) about Severe #MECFS and doctors who have had no training not understanding/listening when they see severly ill patients with #MECFS

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"Most of the people I've seen with #MECFS are so much sicker than my cancer patients." Dr. Fridbjörn Sigurdsson, a former medical oncologist now focused on ME/CFS, speaking at the 2025 Invest in ME conference. Research indicates that for many, severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) can cause a lower quality of life, greater functional impairment, and more daily disruption than many cancers or multiple sclerosis. Patients with ME/CFS often report being bedbound, experiencing severe pain, and having little to no available treatment or path to remission. Key Findings on ME/CFS Severity: Quality of Life: Studies have shown that people with ME/CFS have lower quality of life scores than those with various cancers, stroke, or heart attacks. Daily Functioning: Approximately 25% of people with ME/CFS are severely affected, often housebound or bedbound. Comparison to Cancer: While cancer treatments are intense, they often have a defined endpoint, whereas ME/CFS is frequently a long-term, disabling, and ongoing condition with limited treatment options. Impact on Life: The illness can be so debilitating that it leads to a total loss of ability to work, socialize, or perform basic daily tasks like washing or eating. Severe Symptoms: In severe cases, patients may require tube feeding and live in darkness due to light and sound sensitivity. While cancer remains a highly fatal disease, the chronic, unpredictable, and unsupported nature of ME/CFS leads to extreme, long-term impairment that some sufferers and experts describe as sometimes feeling "worse" due to the lack of effective, universally available treatments

"Most of the people I've seen with #MECFS are so much sicker than my cancer patients." Dr. Fridbjörn Sigurdsson, a former medical oncologist now focused on ME/CFS, speaking at the 2025 Invest in ME conference. Research indicates that for many, severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) can cause a lower quality of life, greater functional impairment, and more daily disruption than many cancers or multiple sclerosis. Patients with ME/CFS often report being bedbound, experiencing severe pain, and having little to no available treatment or path to remission. Key Findings on ME/CFS Severity: Quality of Life: Studies have shown that people with ME/CFS have lower quality of life scores than those with various cancers, stroke, or heart attacks. Daily Functioning: Approximately 25% of people with ME/CFS are severely affected, often housebound or bedbound. Comparison to Cancer: While cancer treatments are intense, they often have a defined endpoint, whereas ME/CFS is frequently a long-term, disabling, and ongoing condition with limited treatment options. Impact on Life: The illness can be so debilitating that it leads to a total loss of ability to work, socialize, or perform basic daily tasks like washing or eating. Severe Symptoms: In severe cases, patients may require tube feeding and live in darkness due to light and sound sensitivity. While cancer remains a highly fatal disease, the chronic, unpredictable, and unsupported nature of ME/CFS leads to extreme, long-term impairment that some sufferers and experts describe as sometimes feeling "worse" due to the lack of effective, universally available treatments

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While patients wait years for surgery and months to see a specialist, Wes Streeting and Keir Starmer are threatening to cut the number of NHS specialist doctor training jobs. Most people don’t realise this, but doctors can’t just become Consultants, Surgeons or GPs on their own. They have to get a speciality training job first. These jobs are controlled and capped by the Government. So when the Government talks about cutting speciality training jobs, what they are really talking about is cutting the number of future specialist doctors in this country. At a time when the NHS already doesn’t have enough doctors. At a time when waiting lists are in the millions. At a time when patients are waiting months just to see a specialist and years for operations. Cutting the number of specialist training jobs will not fix the NHS. It will make waiting lists longer. It will make it harder to see a doctor. It will make the NHS worse for patients. Threatening to reduce the number of future doctors while patients are already struggling to access care is not just a deliberate workforce policy decision. It is a direct threat to the NHS and to the public who rely on it, coming from a ‘Labour’ Government.

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REPORTER: Some people say this is ethnic cleansing TRUMP: We're moving them to a beautiful location where they have new homes, where they can live safely, where they will have doctors and medical and all of those things

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