ME Long Covid unite SA

ME Long Covid unite SA Making invisible illness visible. The ME CFS Foundation South Africa has PBO and Section 18A status. These objectives depend on availability of resources.

Objectives of the Company
(1) The Objectives of the Company are:
(a) The provision of health care services to poor and needy persons where funds allow,
(b) The care or counselling of terminally ill persons or persons with severe physical disability, and the counselling of their families in this regard. (2) The Objectives of the Company will be achieved through the following core activities:
(a)

To provide healthcare and counselling services for those patients who cannot afford them, depending on availability of resources,
(b) To raise awareness of ME/CFS and Long Covid; and
(c) To advocate for the rights and interests of persons living with ME/CFS and Long Covid. Generally, the day-to-day activities of the Foundation will include:
(a) Securing and providing needed healthcare and other services to patients unable to afford them depending on availability of resources;
(b) Establishing care facilities for patients who are unable to afford their own medical care - this is a long term objective;
(c) Running public awareness campaigns and projects to educate people about ME/CFS and Long Covid and the challenges faced by these patients, both diagnosed and undiagnosed, and their families;
(d) Engaging the media to raise the profile of ME/CFS and Long Covid as a serious medical condition;
(e) Creating a network of experts and supporters to assist with the provision of healthcare and counselling;
(f) Being a repository of knowledge and resources for the benefit of patients, their families and carers, the medical profession and other interested parties;
(g) Lobbying the medical profession to see ME/CFS and Long Covid the chronic medical conditions they are, to treat patients with dignity and respect and ensure they receive appropriate medical treatment;
(h) Engaging the Department of Health to advocate for appropriate accommodation of patients in the public healthcare system;
(i) Developing, and keeping updated, training materials based on cutting-edge scientific research on ME/CFS for use in the public and private healthcare sectors for the benefit of patients;
(j) Participating in, and contributing to, relevant research; and
(k) Conducting any other activities that may be necessary, useful, or desirable for the furtherance or accomplishment of the Objectives.

21/08/2025

Miranda Hart reveals she’s living ‘one day at a time’ amid ongoing health struggle

Miranda Hart has opened up about her ongoing battle with Lyme disease, revealing she now takes life “one day at a time”. The 52-year-old BBC favourite explained she’s been living with the condition for decades, having first fallen ill aged 15. Despite experiencing years of chronic fatigue and unexplainable symptoms, she wasn’t officially diagnosed until her mid-40s, when her health took a dramatic turn and she ended up bedbound after collapsing.

In a characteristically humorous video posted to Instagram, Miranda gave an update on her condition – and hinted at some big news to come. The clip began with a playful tease about appearing on Strictly Come Dancing, before she admitted: “Hello to you. Well I have news,” followed by her humming the show’s theme tune. She then added: “No I’m joking, that was a joke.. or was that a double bluff, no really it was a joke… I shouldn’t have said that… what I have done?

“No, the menopausal mounds of this body is not ready for any sort of dancefloor let alone one on national television – no one is ready for that.”

Miranda went on to reflect on her experience releasing a book last year, saying: “This time last year I was telling people rather anxiously that I had written a book about suffering from Lyme disease and other delightful associated conditions.

“I was keeping it a secret that I had just got married because it was a story in said book.I am still completely everyday amazed and grateful and blown away that people have been helped by the book, enjoyed my story and it’s helped their story.”

Touching again on the Strictly rumours – which stemmed from her public support for friend and co-star Sarah Hadland during last year’s series – Miranda clarified why she couldn’t take part in the show just yet: “That’s another reason I couldn’t do Strictly, heavens. The whole Lyme disease and chronic illness conditions, if you are a fellow sufferer then you know that it is one day at time with recovery.”

In previous interviews, Miranda has been open about the impact Lyme disease has had on her daily life, describing the condition as deeply debilitating.

“But yes, since I was 15, I’d say I’ve never had full energy. I never felt refreshed after a night’s sleep. I could never… I’d see people would go out after work or go to a party, and then go to school and think, how are you doing that?

“I just felt quite weak all the time and very strange neurological sensations as well, which doctors couldn’t explain, I had every sort of test. But yes, I’ve never felt well.”

She described the years before her diagnosis as feeling like she was “leading a half-life,” and said her eventual collapse from exhaustion brought a strange sense of “massive relief” as it marked a turning point.

“My body stopped me, and I remember having enough sort of consciousness, as it were, to say, ‘This has to be the beginning of it, this has to be, this will be my change point’.”

According to the NHS, Lyme disease is a bacterial infection transmitted to humans through infected ticks. Symptoms may include a rash, fever, headaches, muscle aches, fatigue, and a general lack of energy. While it can be treated with antibiotics, recovery can be slow, with symptoms lasting for months in some cases.

21/08/2025

Link in 1st comment

21/08/2025

News Release 19-Aug-2025
Patients with Long COVID forced to become their own doctors

https://www.eurekalert.org/news-releases/1095176

"participants ... are using data from smartwatches and symptom-tracking apps to evidence their symptoms to their medical practitioners and advocate for diagnostic tests"

21/08/2025

Read more about the findings of a study on oxidative stress in ME/CFS and long COVID and whether this could influence future treatment: https://bit.ly/3UD17aJ

21/08/2025

Often in ME/CFS research, new studies draw the same – or similar – conclusions to those that have been published previously.

There are several reasons why this replication is important, including accumulation of knowledge over time, increased trustworthiness of findings, and a stronger foundation for new studies to grow from.

Read more here: http://bit.ly/45VVQkW

21/08/2025
21/08/2025

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), already a long-neglected condition, has been thrust into the spotlight by COVID-19. ME/CFS is

Breaking: New grant expands Long COVID Lymph node studyPolyBio Research Foundation and the Wallace Research Foundation a...
21/08/2025

Breaking: New grant expands Long COVID Lymph node study

PolyBio Research Foundation and the Wallace Research Foundation announce a new grant to support continued research into the root causes of impaired antibody responses in some individuals with Long COVID. The project is led by Dr. Michela Locci, an Associate Professor of Microbiology at the Perelman School of Medicine at the University of Pennsylvania.

“PolyBio is very happy with the excellent work Dr. Locci’s team has done thus far on Long COVID lymph node immune responses, with PolyBio’s support” says PolyBio co-founder and neuroscientist Dr. Michael VanElzakker. “The new grant will allow the project team to further expand this work that seeks to help us understand why some people with long COVID may have had a suboptimal initial immune response to SARS-CoV-2 infection.”

The new grant builds on existing research being conducted on lymph node samples collected from Long COVID patients via a biopsy procedure. Ongoing analysis of lymph node samples suggests that SARS-CoV-2-specific B cells in Long COVID patients may produce less effective and shorter-lived antibodies than those in healthy convalescents, suggesting a failure to clear the virus that may underlie persistent symptoms.

The newly funded portion of the study proposes that Epstein-Barr virus— a herpesvirus known to infect B cells—could be disrupting the immune response to SARS-CoV-2 in Long COVID. Dr. Locci and team hypothesize two mechanisms by which this may occur: Epstein-Barr virus (EBV) may alter the developmental programming of SARS-CoV-2-specific B cells, leading them down low-quality antibody pathways, or EBV-infected B cells could be killed off by cytotoxic T cells, depleting the pool of virus-fighting cells. To test these ideas, the team will now apply advanced single-cell RNA sequencing, spatial transcriptomics, and high-dimensional flow cytometry to lymph node aspirates and tonsil organoid models.

“If successful, the continued work could not only explain important Long COVID disease mechanisms, but also open new therapeutic avenues targeting EBV-driven immune interference,” says PolyBio President Dr. Amy Proal.

https://polybio.org/new-grant-expands-long-covid-lymph-node-study/

Address

Great Kei

Website

Alerts

Be the first to know and let us send you an email when ME Long Covid unite SA posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Share

Our Story

The ME CFS Foundation South Africa has PBO and Section 18A status. Objectives of the Company (1) The Objectives of the Company are: (a) The provision of health care services to poor and needy persons; (b) The care or counselling of terminally ill persons or persons with severe physical disability, and the counselling of their families in this regard. (2) The Objectives of the Company will be achieved through the following core activities: (a) To provide healthcare and counselling services for those patients who cannot afford them; (b) To raise awareness of ME/CFS; and (c) To advocate for the rights and interests of persons living with ME/CFS. Generally, the day-to-day activities of the Foundation will include: (a) Securing and providing needed healthcare and other services to patients unable to afford them; (b) Establishing care facilities for patients who are unable to afford their own medical care; (c) Running public awareness campaigns and projects to educate people about ME/CFS and the challenges faced by ME/CFS patients, both diagnosed and undiagnosed, and their families; (d) Engaging the media to raise the profile of ME/CFS as a serious medical condition; (e) Creating a network of experts and supporters to assist with the provision of healthcare and counselling; (f) Being a repository of knowledge and resources for the benefit of patients, their families and carers, the medical profession and other interested parties; (g) Lobbying the medical profession to see ME/CFS as the chronic medical condition it is, to treat patients with dignity and respect and ensure they receive appropriate medical treatment; (h) Engaging the Department of Health to advocate for appropriate accommodation of patients in the public healthcare system; (i) Developing, and keeping updated, training materials based on cutting-edge scientific research on ME/CFS for use in the public and private healthcare sectors for the benefit of patients; (j) Participating in, and contributing to, relevant research; and (k) Conducting any other activities that may be necessary, useful, or desirable for the furtherance or accomplishment of the Objectives.

A visual Summary:

The above stats info graphic is by Nathalie Williams, a talented young lady - now confine to bed due to ME/CFS!

THE ME CFS FOUNDATION SOUTH AFRICA #ME/CFS - see our service section for more details as well as our about section for more details or visit our website at : https://www.mecfssa.org