ME Long Covid unite SA

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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.

23/10/2026
23/10/2026

The cognitive impact of Fibromyalgia can make standard communication feel like a sudden uphill battle.

Knowing exactly what you mean but being unable to find the words creates an immediate barrier during everyday conversations. This specific symptom isn't about a lack of knowledge; it is a physical processing delay that causes thoughts to disappear right when you need them. Navigating these mental pauses requires a lot of patience and energy.

How do you handle conversations on days when the cognitive fog is at its peak?

23/10/2026

A nice play on a familiar graphic... I turned it up a notch for us chronic folks!

Why you should never offer health advice...

Someone's health (illustrated as large circle)

What you know about it! (The tiny dot in the circle.)

Credit: Carrie Marshall


23/10/2026

✨📷👩‍🦽✨

Image description: a BlueSky post by Misa on Wheels that reads:

“Dear photographers,

Please do not assume that a mobility aid user does not want their mobility aid in the photos.

Please do not ask a mobility aid user if you want them to hide their mobility aid or have it removed for the photo.

Please do not suggest the world looks nicer without mobility aids.”

23/10/2026

Link crediting source in comments

23/10/2026

One of the hardest parts of invisible illness is constantly being asked to prove something your body never lets you forget.

Prove that you’re sick.
Prove that you’re in pain.
Prove that you’re exhausted.
Prove that you need accommodations.
Prove that you really can’t “just push through.”

When an illness or disability is invisible, people often judge what they can’t see by what you look like on the outside.

But looking okay is not the same as feeling okay.

You can smile and still be in pain.
Show up and still be struggling.
Work and still be disabled.
Have good days and still have a chronic illness.
Need support even when there is no visible sign that anything is wrong.

That constant pressure to explain, justify and defend your limitations can be exhausting all on its own.

For , this is something I wish more people understood.

23/10/2026

“An academic living with multiple disabilities has said she feels "deleted" by the health service, which expects her to go to sleep at 7pm in the evening.

Margaret Kennedy, a PhD expert in the fields of child and adult protection, said once someone turns 65 in Ireland — when personal assistance provided by the HSE moves from an independent living model to a more basic care-at-home system — they are no longer deemed to be productive and unworthy of assistance.

Ms Kennedy, a 73-year-old twin sister to Ann, who also suffers from Parkinson's disease and muscle myopathy, told a conference in Dublin she feels "humiliated" by being unable to access personal assistance on her own terms.

Addressing a seminar in Dublin organised by disability advocacy groups Cothrom and Care Champions, she said the care afforded her amounted to "coercive control", as she was made to sign a contract agreeing "to get ready for bed at 7pm", saying she was told "if you don't sign we cannot give you a service".”

23/10/2026

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Great Kei

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