Dr Sarah Myhill - CFS Expert from UK (23/4/2021)

Has treated over 5000 CFS patients.

She gives us hope for the right treatment.

I hope doctors in Malaysia will learn from her to understand CFS better.

Its truly a physical illness. Caused by mitochondrial dysfunction. Physical cause. Vaccination and viral infection are some of the causes of mitochondrial dysfunction. I remember receiving 8 vaccination and infected by Epstein Barr virus before CFS arises. 

Im excited to follow all her recommendation available online.

CBT and Exercise are not the solution. It just makes the illness worse. Why..? Watch this video and you will get the answer. 

Link : Dr Sarah Myhill on CFS

WHAT EXPERT SAYS ABOUT CFS (14/7/2020)

Link Video : https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

Well said sir.. Your words show you have lots of experience dealing with patients with CFS (Chronic Fatigue Syndromes). I hope doctors and specialist will learn from you and stop blaming CFS patients and accusing them as "lazy, lack of spirit etc . I have experienced multiple occasions of crying intensely after meeting some of those "specialists". One of them even said to me "When are u going to recover..???" (Awak ni bila nak baik..??)

10 years of having CFS never breaks my spirit. never breaks my faith. I thank Allah for giving me intellect that i do not behave irrationally like them. But of course it is super hard to avoid feeling sad when people keep accusing us with sharp words. Their sharp words are poison which will stick in our mind, and like a tape recorder, the words will keep on playing in our mind, breaking our hearts again and again..

To Allah we seek strength and patience.

DESPERATELY TRYING TO FIND A NEW PLACE (14/7/2020)

Recently i shed tears heavily . Im stucked. I don't know where to go. My physical weakness is getting worse and my noise hypersensitivity has become severe too. The sounds of television in front of my room and hearing housemates talking and laughing loudly torture me mentally emotionally physically that i can no longer hold my tears.my body immediately jumps to phase 3. panting. experiencing difficulty in moving eating and to carry out my simple basic routine..  ive been forcing myself taking care of the house's cleanliness till now. and it just makes my illness much worse. i love this place a lot. but i guess i cant stay here anymore..

in my desperate attempt to search for a better place, i lost RM400 to a scammer who gave me hope and promised to help me with his kind words pretending to be a sincere person. I know the risk of getting cheated is high and i took precaution by getting his IC and his bank account. But i desperately need a place. Crying and worrying everyday is consuming my 3% energy . I can no longer focus on my daily therapy. I can no longer focus on improving my well-being. The world seems so dark. The pain is so intense i ask Allah to take my soul away . Returning to Him is a big relief rather than facing the pain dealing with 8 housemates, cleanliness issue, noise issue, house issue, etc. But He refuses to answer this doa of mine. And surely its for a reason. That i still have a role to play in this world despite my limited capacity. Surely He does not create me without purpose.

I accept this and ask Allah to grant me strength and patience to exert effort to find a healing place. He knows my limit. And He is The All Loving , The All merciful. To Him we rely . To Him we put our hope and trust.

He's the One Who has been helping me escaping from dangers and predators.
He's the One Who shows me the way out when every door is closed to me .
He's the One Who grants me help from unexpected channels and means.
He's our only source of Hope.

A NEW BREATH OF LIFE (22/5/2019)

Memo i sent to Baitulmal and JKM

SUCCESS IN OBTAINING FINANCIAL SUPPORT

Salam and Peace to All,

Dear brothers and sisters across the globe,

First and foremost I would like to express my deepest gratitude to God, The All-Compassionate Creator, The Merciful One, for His continuous and miraculous support in my life. And I would like to share the good news to you our dear readers, of our success in obtaining financial support after almost 3 months struggling for it. It's not an easy journey. Full of risks and challenges. Testing faith and determination. All for the sake of preserving honor, peace and freedom. To live honorably as a human being despite having limitation and disabilities. And for me nothing is more precious than peace and honor.

MIIA has always been my loyal companion in this challenging journey especially its two members, Mr Rakesh Kumar (The President) and his awesome teammate, Miss Hidayah. They helped me to attend clinic and hospital appointments,  offered me transport to variety of important places, helped me to complete all the documents needed, provided me with food supply, and constantly offering me with physical, emotional and psychological support.  I enjoy this bitter and painful journey due to their endless support and cheerful smile. They sacrificed their time, money and energy to support me throughout this journey. Alhamdulillah. Im grateful to God to be able to meet such kind-hearted and loving people. May God prolongs their life.

Today, I live peacefully in a new, beautiful, peaceful place. A place that provides all the facilities I need, a place suitable for my illness and disabilities, plus an awesome electrical wheelchair, and also the financial support from government institutions such as Baitulmal. I couldn’t achieve any of these without His grace and mercy, and the endless support of very committed friends from MIIA.  I manage to obtain OKU card last year with their support too.

Today, I feel a new breath into my life… A new beginning.  I no longer have to go back to torturing places again. I no longer have to suffer alone. A huge relief indeed. Alhamdulilah.

Thank you MIIA for the constant care and support,

May God bless and reward you all.

SENSORY OVERLOAD - A REAL TORTURE (11/4/2019)

Sensory overload - https://www.verywellhealth.com/sensory-overload-in-fibromyalgia-and-chronic-fatigue-716021



where you become sensitive with many stimulations around you like noise, light, smell, people, chaotic environment which can cause panic attack like heart pounding, feeling restless n anxious constantly, unable to focus. its a very painful and torturing moment that i ask God to take my soul away and save me from such moment. Its real.



10 essential facts about CFS

https://www.everydayhealth.com/news/essential-facts-about-chronic-fatigue-syndrome/

https://www.medicalnewstoday.com/articles/184802.php - good article CFS

CHALLENGES OBTAINING FINANCIAL HELP (30/3/2019)

ORTHOSTIC INTOLERANCE - A REAL TORTURE (29/3/2019)

Orthostatic intolerance - https://www.verywellhealth.com/chronic-fatigue-syndrome-symptoms-716110

means that you have a worsening of your symptoms when you are standing or sitting upright constantly

now i just learn the new terminology of another symptoms of mine. the inability to sit n stand for long hours which lead to intense torturing . or..thos..static

i think this is a very good websites to educate people and pakar out there about CFS.. Please educate them and stop torturing us further with cynical remarks and treat us like mice lab ..all those procedures make our condition much worse and it will take years to stabilize it.