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.

24/06/2026

A reminder that our Severe ME Artists Project 2026 is coming up! Deadline to submit is July 24th. All the info you need is here: https://www.meaction.net/post/severe-me-artists-project-2026-call-for-entries

***Please note if you had an issue uploading a video, that is now fixed! Please retry!***

Our Severe ME Project grew out of a desire from our community to share their art. We offered a live video Artists Salon (and plan to again later this fall), but that is not accessible to many with severe ME. We have received such an amazing response each year.

Please know that you can email us for help! We are here to help you! Email us at [email protected].

Instructions:
- Submit one piece of artwork - image, writing, or video

- Label your artwork with your name as you want it to appear, an underscore, and the number of years with severe ME
Example: Lastname_FirstName_14
FirstNameOnly_7

- No copyrighted material

- Videos should be under 2 minutes

- Submission due by July 24th

As always, holding everyone who cannot participate close. You are always in our hearts and minds.



Alt text embedded.
Image description: Watercolor background in greens, tans, reds with a white box in center with instructions for Severe ME Artists Project 2026. Instructions in post.

24/06/2026

FIBROMYALGIA TEMPERATURE DYSREGULATION, EXCESSIVE SWEATING AND NIGHT SWEATS:

Current research suggests that excessive sweating and night sweats in Fibromyalgia are most likely related to autonomic nervous system dysfunction (dysautonomia). The autonomic nervous system controls involuntary functions such as:

* Body temperature regulation
* Sweating
* Heart rate
* Blood pressure
* Digestion
* Sleep-wake cycles

When this system becomes dysregulated, the body may overreact or respond inappropriately to temperature changes, stress, exertion, or sleep transitions, resulting in:

* Excessive sweating
* Night sweats
* Hot flashes
* Cold sweats
* Feeling hot and cold at the same time
* Difficulty regulating body temperature

Multiple studies have identified autonomic nervous system abnormalities in Fibromyalgia patients.

What Does the Research Show?

1. Fibromyalgia Is Associated With Dysautonomia

Researchers from the Mayo Clinic found that individuals with Fibromyalgia report significantly more autonomic symptoms than healthy controls, including symptoms related to temperature regulation and sweating.

A 2024 electrophysiological study again found evidence supporting autonomic dysfunction in Fibromyalgia patients.

RESEARCH SOURCE: https://journals.sagepub.com/doi/full/10.1177/09733698241284000?utm_source=chatgpt.com

2. Sweating Is Controlled By the Sympathetic Nervous System

A 2020 study examining sweat gland activity and skin conductance noted:

Sweating is exclusively controlled by sympathetic mechanisms.

The investigators found abnormal sympathetic nervous system function in women with Fibromyalgia compared with healthy controls.

This is important because if the sympathetic nervous system becomes unstable or overreactive, sweating can occur:

* With minimal activity
* During sleep
* During Fibromyalgia flares
* Without obvious heat exposure

RESEARCH SOURCE: https://pmc.ncbi.nlm.nih.gov/articles/PMC7595305/

3. Temperature Regulation Problems Are Common

Research has shown that Fibromyalgia involves abnormalities in autonomic regulation, including altered heart rate variability and sympathetic nervous system activity. These abnormalities may contribute to the “internal thermostat” problems frequently reported by patients.

Many patients describe:

* Feeling overheated when others are comfortable
* Profuse sweating with mild exertion
* Sudden hot flashes
* Night sweats despite a cool room
* Alternating chills and sweating

These symptoms are consistent with autonomic dysfunction.

RESEARCH SOURCE: https://pmc.ncbi.nlm.nih.gov/articles/PMC4766072/

What About Night Sweats Specifically?

Night sweats in Fibromyalgia likely have multiple contributing factors:

Dysautonomia: The autonomic nervous system normally reduces body temperature during sleep. Dysregulation may cause inappropriate sweating episodes during the night.

RESEARCH SOURCE: https://pmc.ncbi.nlm.nih.gov/articles/PMC4766072/

Sleep Disturbances: Fibromyalgia is strongly associated with disrupted sleep architecture and non-restorative sleep. Sleep instability may contribute to fluctuations in autonomic activity and nighttime sweating.

RESEARCH SOURCE: https://arxiv.org/abs/2503.10271

Pain and Stress Hormones: Chronic pain activates stress-response pathways involving the sympathetic nervous system. This heightened “fight-or-flight” state may increase sweating tendencies.

RESEARCH SOURCE: https://pmc.ncbi.nlm.nih.gov/articles/PMC7417433/

For many Fibromyalgia patients, sweating is not caused solely by Fibromyalgia but can be exacerbated by medications.

Several medications commonly prescribed for Fibromyalgia can cause excessive sweating and night sweats, including:

* Duloxetine (Cymbalta)
* Venlafaxine (Effexor)
* Milnacipran (Savella)
* SSRIs
* Tramadol
* Some migraine medications

If sweating began or worsened after starting a medication, it may be worth discussing with your physician. Community reports frequently identify SNRIs such as duloxetine as a trigger for severe sweating and night sweats.

When Night Sweats Should Be Evaluated

Because Fibromyalgia itself can cause sweating problems, it is easy to assume all sweating is Fibromyalgia-related. However, persistent or severe night sweats should be evaluated to rule out other causes such as:

* Menopause or perimenopause
* Thyroid disorders
* Sleep apnea
* Infections
* Certain cancers (rare but important)
* Medication side effects
* Blood sugar abnormalities

Medical literature increasingly supports a connection between Fibromyalgia and excessive sweating through autonomic nervous system dysfunction. Studies have demonstrated abnormalities in sympathetic nervous system activity, heart rate variability, skin conductance (a measure related to sweating), and other autonomic functions in Fibromyalgia patients. These abnormalities provide a biologically plausible explanation for excessive sweating, temperature dysregulation, hot flashes, and night sweats experienced by many people living with Fibromyalgia.

RESEARCH SOURCE: https://pmc.ncbi.nlm.nih.gov/articles/PMC7595305/

RESEARCH SOURCE: https://pubmed.ncbi.nlm.nih.gov/27152281/

RESEARCH SOURCE: https://pmc.ncbi.nlm.nih.gov/articles/PMC4766072/

For someone with your history of severe Fibromyalgia, chronic fatigue, migraines, Raynaud’s syndrome, and sleep disruption, autonomic dysfunction would be a very plausible explanation for episodes of excessive sweating or night sweats. However, it’s still worth discussing persistent symptoms with your healthcare provider to rule out medication effects or other medical causes.

24/06/2026

Een verlegen 14-jarige

𝘔𝘢𝘵𝘵𝘪𝘦 𝘔𝘦𝘦𝘳𝘵𝘴𝘦 𝘬𝘪𝘫𝘬𝘵 𝘵𝘦𝘳𝘶𝘨 𝘰𝘱 𝘸𝘢𝘵 𝘻𝘦 𝘩𝘦𝘦𝘧𝘵 𝘮𝘦𝘦𝘨𝘦𝘮𝘢𝘢𝘬𝘵 𝘮𝘦𝘵 𝘛𝘪𝘮 (𝘯𝘶 31) 𝘥𝘪𝘦 𝘯𝘶 𝘢𝘭 16 𝘫𝘢𝘢𝘳 𝘔𝘌 𝘩𝘦𝘦𝘧𝘵. 𝘚𝘪𝘯𝘥𝘴 8 𝘫𝘢𝘢𝘳 𝘪𝘴 𝘻𝘪𝘫 𝘻𝘪𝘫𝘯 𝘮𝘢𝘯𝘵𝘦𝘭𝘻𝘰𝘳𝘨𝘦𝘳 𝘰𝘱 200 𝘬𝘮 𝘢𝘧𝘴𝘵𝘢𝘯𝘥. 𝘡𝘦 𝘩𝘦𝘦𝘧𝘵 𝘰𝘱 𝘻𝘰𝘭𝘥𝘦𝘳 𝘦𝘦𝘯 𝘴𝘤𝘩𝘳𝘪𝘧𝘵𝘫𝘦 𝘨𝘦𝘷𝘰𝘯𝘥𝘦𝘯 𝘮𝘦𝘵 𝘢𝘢𝘯𝘵𝘦𝘬𝘦𝘯𝘪𝘯𝘨𝘦𝘯 𝘶𝘪𝘵 𝘥𝘦 𝘣𝘦𝘨𝘪𝘯𝘱𝘦𝘳𝘪𝘰𝘥𝘦 𝘷𝘢𝘯 𝘛𝘪𝘮𝘴 𝘻𝘪𝘦𝘬 𝘻𝘪𝘫𝘯.

De zorgverlener is net de deur uit en Tim zegt: “Mam, ze mag je niet.” Hij voelt dat perfect aan en vindt dat vervelend, want hij wil de relatie graag goed houden.

“Tim, ik ben hier niet om vrienden te maken met zorgverleners. Ik ben hier om goed voor jou te zorgen en om jouw mening te verwoorden als jij er te moe voor bent.”

Ergens in mijn hoofd ben ik nog steeds dat verlegen 14-jarige meisje dat niet tegen autoriteiten in durft te gaan. Altijd aardig en meegaand alsof ik de term vriendelijk en diplomatiek zelf heb uitgevonden.

Zo dacht ik altijd dat ik best assertiever en steviger had kunnen reageren naar de school van Tim toe. Tot er uit dat schriftje dat ik op zolder vond een mail viel, gestuurd aan de school toen Tim net ME had.

De achtergrond: op advies van de schoolarts was met de school afgesproken dat we een schema zouden opstellen tot de kerstvakantie (2 weken) wanneer Tim lessen zou volgen. We hadden bedacht dat er van elk vak 1 lesuur gevolgd zou worden, dat leek ons redelijk. De school keek daar in een mail toch net iets anders tegenaan.

Ik citeer enkele zinnen uit deze mail. Blijkbaar kon ik nog net genoeg diplomatie opbrengen om de eerste alinea te beginnen met begrip. Maar dat duurde niet lang.

𝘉𝘦𝘴𝘵𝘦 𝘮𝘦𝘷𝘳𝘰𝘶𝘸 𝘛𝘦𝘢𝘮𝘭𝘦𝘪𝘥𝘦𝘳,

𝘐𝘬 𝘣𝘦𝘨𝘳𝘪𝘫𝘱 𝘥𝘢𝘵 𝘶 1 𝘶𝘶𝘳 𝘱𝘦𝘳 𝘸𝘦𝘦𝘬 𝘱𝘦𝘳 𝘷𝘢𝘬 𝘸𝘦𝘪𝘯𝘪𝘨 𝘷𝘪𝘯𝘥𝘵 𝘢𝘭𝘴 𝘩𝘦𝘵 𝘳𝘦𝘨𝘶𝘭𝘪𝘦𝘳𝘦 𝘳𝘰𝘰𝘴𝘵𝘦𝘳 4 𝘶𝘶𝘳 𝘱𝘦𝘳 𝘷𝘢𝘬 𝘷𝘰𝘰𝘳𝘴𝘤𝘩𝘳𝘪𝘫𝘧𝘵. 𝘋𝘪𝘵 𝘪𝘴 𝘰𝘰𝘬 𝘨𝘦𝘦𝘯 𝘳𝘰𝘰𝘴𝘵𝘦𝘳 𝘷𝘰𝘰𝘳 𝘥𝘦 𝘳𝘦𝘴𝘵 𝘷𝘢𝘯 𝘩𝘦𝘵 𝘴𝘤𝘩𝘰𝘰𝘭𝘫𝘢𝘢𝘳, 𝘮𝘢𝘢𝘳 𝘴𝘭𝘦𝘤𝘩𝘵𝘴 𝘵𝘰𝘵 𝘥𝘦 𝘬𝘦𝘳𝘴𝘵𝘷𝘢𝘬𝘢𝘯𝘵𝘪𝘦.

𝘜 𝘬𝘶𝘯𝘵 𝘩𝘦𝘮 𝘸𝘦𝘭 𝘸𝘪𝘭𝘭𝘦𝘯 𝘷𝘦𝘳𝘱𝘭𝘪𝘤𝘩𝘵𝘦𝘯 𝘰𝘮 𝘮𝘦𝘦𝘳 𝘭𝘦𝘴𝘴𝘦𝘯 𝘰𝘱 𝘦𝘦𝘯 𝘥𝘢𝘨 𝘵𝘦 𝘷𝘰𝘭𝘨𝘦𝘯, 𝘮𝘢𝘢𝘳 𝘢𝘭𝘴 𝘩𝘪𝘫 𝘩𝘪𝘦𝘳𝘮𝘦𝘦 𝘰𝘷𝘦𝘳 𝘻𝘪𝘫𝘯 𝘨𝘳𝘦𝘯𝘻𝘦𝘯 𝘩𝘦𝘦𝘯 𝘨𝘢𝘢𝘵 𝘥𝘢𝘯 𝘥𝘶𝘶𝘳𝘵 𝘻𝘪𝘫𝘯 𝘩𝘦𝘳𝘴𝘵𝘦𝘭 𝘷𝘦𝘦𝘭 𝘭𝘢𝘯𝘨𝘦𝘳 𝘦𝘯 𝘥𝘢𝘵 𝘬𝘰𝘮𝘵 𝘥𝘦 𝘤𝘪𝘫𝘧𝘦𝘳𝘴 𝘦𝘯 𝘥𝘦 𝘴𝘭𝘢𝘢𝘨𝘬𝘢𝘯𝘴 𝘷𝘰𝘰𝘳 𝘩𝘦𝘵 𝘦𝘹𝘢𝘮𝘦𝘯 𝘯𝘪𝘦𝘵 𝘦𝘤𝘩𝘵 𝘵𝘦𝘯 𝘨𝘰𝘦𝘥𝘦, 𝘻𝘰𝘢𝘭𝘴 𝘶 𝘻𝘶𝘭𝘵 𝘣𝘦𝘨𝘳𝘪𝘫𝘱𝘦𝘯.

𝘞𝘢𝘵 𝘪𝘴 𝘦𝘪𝘨𝘦𝘯𝘭𝘪𝘫𝘬 𝘩𝘦𝘵 𝘯𝘶𝘵 𝘷𝘢𝘯 𝘩𝘦𝘵 𝘷𝘰𝘭𝘨𝘦𝘯 𝘷𝘢𝘯 𝘮𝘦𝘦𝘳 𝘭𝘦𝘴𝘶𝘳𝘦𝘯 𝘢𝘭𝘴 𝘛𝘪𝘮 𝘥𝘢𝘢𝘳 𝘣𝘪𝘫𝘯𝘢 𝘻𝘪𝘵 𝘵𝘦 𝘴𝘭𝘢𝘱𝘦𝘯 𝘷𝘢𝘯 𝘷𝘦𝘳𝘮𝘰𝘦𝘪𝘥𝘩𝘦𝘪𝘥 𝘦𝘯 𝘩𝘪𝘫 𝘵𝘳𝘪𝘭𝘭𝘦𝘯𝘥 𝘻𝘪𝘤𝘩𝘻𝘦𝘭𝘧 𝘱𝘳𝘰𝘣𝘦𝘦𝘳𝘵 𝘴𝘵𝘢𝘢𝘯𝘥𝘦 (𝘻𝘪𝘵𝘵𝘦𝘯𝘥𝘦) 𝘵𝘦 𝘩𝘰𝘶𝘥𝘦𝘯? 𝘏𝘦𝘵 𝘪𝘴 𝘷𝘰𝘰𝘳 𝘩𝘦𝘮 𝘯𝘶 𝘣𝘦𝘭𝘢𝘯𝘨𝘳𝘪𝘫𝘬 𝘥𝘢𝘵 𝘩𝘪𝘫 𝘭𝘶𝘪𝘴𝘵𝘦𝘳𝘵 𝘯𝘢𝘢𝘳 𝘻𝘪𝘫𝘯 𝘭𝘪𝘤𝘩𝘢𝘢𝘮 𝘦𝘯 𝘥𝘢𝘵 𝘩𝘪𝘫 𝘯𝘪𝘦𝘵 𝘰𝘷𝘦𝘳 𝘻𝘪𝘫𝘯 𝘨𝘳𝘦𝘯𝘻𝘦𝘯 𝘩𝘦𝘦𝘯 𝘨𝘢𝘢𝘵. 𝘏𝘪𝘫 𝘪𝘴 𝘴𝘦𝘳𝘪𝘦𝘶𝘴 𝘦𝘯 𝘩𝘦𝘦𝘧𝘵 𝘷𝘦𝘳𝘢𝘯𝘵𝘸𝘰𝘰𝘳𝘥𝘦𝘭𝘪𝘫𝘬𝘩𝘦𝘪𝘥𝘴𝘨𝘦𝘷𝘰𝘦𝘭 𝘨𝘦𝘯𝘰𝘦𝘨 𝘰𝘮 𝘥𝘢𝘢𝘳 𝘨𝘦𝘦𝘯 𝘮𝘪𝘴𝘣𝘳𝘶𝘪𝘬 𝘷𝘢𝘯 𝘵𝘦 𝘮𝘢𝘬𝘦𝘯.

𝘏𝘦𝘵 𝘳𝘰𝘰𝘴𝘵𝘦𝘳 𝘪𝘴 𝘥𝘰𝘰𝘳 𝘰𝘯𝘴 𝘰𝘱𝘨𝘦𝘴𝘵𝘦𝘭𝘥 𝘰𝘮 𝘛𝘪𝘮 𝘻𝘪𝘫𝘯 𝘦𝘯𝘦𝘳𝘨𝘪𝘦 𝘨𝘦𝘭𝘪𝘫𝘬𝘮𝘢𝘵𝘪𝘨 𝘰𝘷𝘦𝘳 𝘥𝘦 𝘸𝘦𝘦𝘬 𝘵𝘦 𝘬𝘶𝘯𝘯𝘦𝘯 𝘷𝘦𝘳𝘥𝘦𝘭𝘦𝘯 𝘦𝘯 𝘩𝘦𝘮 𝘥𝘶𝘪𝘥𝘦𝘭𝘪𝘫𝘬𝘩𝘦𝘪𝘥 𝘵𝘦 𝘣𝘪𝘦𝘥𝘦𝘯 𝘻𝘰𝘥𝘢𝘵 𝘦𝘳 𝘱𝘦𝘳 𝘥𝘢𝘨 𝘨𝘦𝘦𝘯 𝘬𝘰𝘦𝘩𝘢𝘯𝘥𝘦𝘭 𝘰𝘯𝘵𝘴𝘵𝘢𝘢𝘵 𝘰𝘷𝘦𝘳 𝘦𝘦𝘯 𝘶𝘶𝘳𝘵𝘫𝘦 𝘮𝘦𝘦𝘳 𝘰𝘧 𝘮𝘪𝘯𝘥𝘦𝘳.

𝘝𝘦𝘳𝘨𝘦𝘦𝘵 𝘯𝘪𝘦𝘵 𝘥𝘢𝘵 𝘯𝘢𝘢𝘴𝘵 𝘥𝘦 𝘭𝘦𝘴𝘶𝘳𝘦𝘯 𝘰𝘱 𝘴𝘤𝘩𝘰𝘰𝘭 𝘩𝘪𝘫 𝘰𝘰𝘬 𝘯𝘰𝘨 𝘩𝘶𝘪𝘴𝘸𝘦𝘳𝘬 𝘦𝘯 𝘵𝘩𝘶𝘪𝘴𝘰𝘱𝘥𝘳𝘢𝘤𝘩𝘵𝘦𝘯 𝘩𝘦𝘦𝘧𝘵. 𝘏𝘦𝘵 𝘪𝘴 𝘷𝘰𝘰𝘳 𝘩𝘦𝘮 𝘯𝘪𝘦𝘵 𝘮𝘰𝘨𝘦𝘭𝘪𝘫𝘬 𝘰𝘮 𝘥𝘦𝘻𝘦 𝘰𝘱𝘥𝘳𝘢𝘤𝘩𝘵𝘦𝘯 𝘵𝘦 𝘥𝘰𝘦𝘯 𝘢𝘭𝘴 𝘩𝘪𝘫 𝘮𝘦𝘦𝘳 𝘯𝘢𝘢𝘳 𝘴𝘤𝘩𝘰𝘰𝘭 𝘨𝘢𝘢𝘵. 𝘏𝘦𝘵 𝘢𝘭𝘵𝘦𝘳𝘯𝘢𝘵𝘪𝘦𝘧 𝘷𝘰𝘰𝘳 𝘥𝘪𝘵 𝘳𝘰𝘰𝘴𝘵𝘦𝘳 𝘪𝘴 𝘥𝘢𝘵 𝘸𝘦 𝘩𝘦𝘮 𝘷𝘰𝘭𝘭𝘦𝘥𝘪𝘨 𝘻𝘪𝘦𝘬 𝘮𝘦𝘭𝘥𝘦𝘯 𝘦𝘯 𝘥𝘢𝘢𝘳 𝘴𝘤𝘩𝘪𝘦𝘵 𝘯𝘪𝘦𝘮𝘢𝘯𝘥 𝘪𝘦𝘵𝘴 𝘮𝘦𝘦 𝘰𝘱. 𝘛𝘪𝘮 𝘢𝘭 𝘩𝘦𝘭𝘦𝘮𝘢𝘢𝘭 𝘯𝘪𝘦𝘵.

𝘖𝘶𝘥𝘦𝘳𝘴 𝘷𝘢𝘯 𝘛𝘪𝘮

Toch wel redelijk duidelijk. Het is meer een mail van een leeuw die haar welp beschermt tegen de boze buitenwereld dan één van een verlegen meisje. Blijkbaar had ik op dat moment de verlegen 14-jarige al grotendeels de deur uit gedaan. Achteraf gezien hoef ik daarom geen schuldgevoel te hebben dat ik niet harder gevochten heb.

Na deze mail hebben we toch gewoon ons eigen rooster gevolgd en Tim naar zijn lichaam laten luisteren. Hij is met minimaal zevens geslaagd, dus ons rooster was niet echt een ramp voor het uiteindelijke resultaat.

Mattie

Zie ook de post op onze site https://tinyurl.com/2xjs2fcp

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