• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Tom Kindlon has posted a moving letter he has received from a daughter whose mum had ME

Countrygirl

Senior Member
Messages
5,429
Location
UK
A letter to Tom Kindlon on Co-Cure from a daughter about her mother who had M.E. From Tom Kindlon on Co-Cure:

-----------------

A moving letter I have just received, posted with permission. It can also be reposted.

Hiya Tom. How are you?

I’m sad to say that my beautiful mam died of pancreatic cancer last Friday, aged 58, just one month after her diagnosis. BUT HERE ARE A FEW VERY IMPORTANT POINTS:

1. The symptoms of my mam’s ME, which she had for about 20 years, 17 of which were of an official diagnosis, were undifferentiated from the cancer she eventually died from. When she was diagnosed with cancer, her life didn’t even change as she had been in such pain, exhaustion and isolation for 20 years already. It was literally only in the last 3 days of her life where we could tell she now ‘had something different’. How shocking is that? To feel and live like you have aggressive, advanced cancer for so long when blood tests keep coming back fine and people keep telling you to do graded exercise, ‘get out in the sun’ and ‘you’re just depressed’ and for you to be passed from pillar to post with no-one understanding what’s wrong with you. The
symptoms of ME were the SAME as the symptoms of aggressive, advanced cancer, for my mam.

2. As soon as the word ‘cancer’ was mentioned, my mam had, thankfully, all the support in the world - endless meals cooked, fast-tracked appointments, visitors who’d stay just the right amount of time - same for me and my sister - so much beautiful support which I’m eternally grateful for. But my sister and I were like ‘My mam needed this level of support and our family needed this level of support all along - why did no-one take us seriously?’ In many ways, ME absolutely destroyed our family.

3. I was so, SO ground down with spending ages explaining to my friends my mam’s ME - her excruciating pain, aversion to light and sound, repeated infections, persistent lack of appetite, almost complete isolation from loved ones, depression, terrible brain fog ... only for them to say in passing a few weeks later ‘Uh, ya mam has ME, doesn’t she? She just gets, like, really tired, doesn’t she?’ OR WORSE ‘I get that sometimes, like really tired after a hard week at work.’

4. I am GOING TO CHANGE THINGS. I feel so angry about this disease and STILL the completely ignorant attitude of many doctors, family members and friends about it. I haven’t worked out how, exactly, yet, as I’m still very raw from my mam’s death less than a week ago BUT I am going to make it my mission to make people WAKE THE F*** UP about this devastating illness which, for 20 years, gave my mam THE SAME SYMPTOMS
AS AGGRESSIVE, ADVANCED CANCER yet NO SUPPORT from doctors and derision from many other people.

Thank you so much for he support your page gave my mam. Please feel free to repost this or pass it on to anyone you like.

Lots of love, Lisa Lowery. Xxx
 

Diwi9

Administrator
Messages
1,780
Location
USA
Lisa Lowery has already done more than she knows just by having her letter published by Tom. It is profoundly encouraging to know that someone else without this disease understands the dilemmas we face. I'm just sorry that she had to go through the devastation of losing her mother after so many years of suffering. The pain of seeing "help" that arrived too late when her mother's sickness was finally justified is salt in a wound. I wonder if her mother was diagnosed so late because ME masked her cancer or if she was neglected by the medical field...or both?