‘My child died of ME’: a scandal waiting for its Post Office moment

8 comments

1. Although I think ME needs to be taken seriously etc I do wish people would stop using phrases like ‘it’s not all in my mind’ as if mental health problems are not serious/real/acceptable and don’t have physiological symptoms/effects.

   Edit: added real/acceptable

2. For those wondering ME is Myalgic encephalomyelitis or chronic fatigue syndrome.

   Very poor by the journalist to not use the full title of the illness before referring to it by its initialism. 

3. Since no outlet seems to publish the answer are we to infer that the cause of death was suicide?

4. Fibromyalgia is the same. While we still don’t have a clear cause of what actually causes it (cos it doesn’t show up in blood tests and conflicting studies) we still have many people and many doctors instantly dismiss it as a mental health problem despite research that showing that it is an actual disease. While it’s seen as a problem where the messages between your brain and spinal cord is misfiring so your nervous system is in overdrive mode other research has shown it could be an autoimmune disease but ATM studies are very conflicting.

   I have fibromyalgia and I wouldn’t wish it on my worse enemy. Not only does it leave me with chronic nerve pain, chronic stomach problems, chronic memory problems, chronic sleep problems, chronic muscle weakness, chronic fluctuating numbness in my back my hands my feet and my….men’s area…etc etc (the list is endless) but having it also being blamed on a mental health when people do not have a god damn clue (especially with doctors) is horrific.

   I showed my doctor a study done by Kings College London around COVID time and he said it looked promising. The study basically took antibodies from people with fibromyalgia, Injected them into mice and when that happened they got very sick. When they got rid of the antibodies they improved which showed it was an autoimmune problem caused by antibodies attacking/binding of sorts to a nerve somewhere in your back. So I knew about that study.

   What I didn’t know is that after that the study was redone but with people and the results were exactly the same. So we actually do have an effective treatment however the health governing bodies and the NHS don’t want to admit that study because if they did they would have to treat every fibromyalgia patient with the same treatment which would be insanely expensive and would also actually have to admit that it is a autoimmune disease. This was all told to me by my neurologist. He also thinks that fibromyalgia is an autoimmune and inflammation problem and I agree with him. I’ve always felt it was autoimmune because it acts like it’s autoimmune. He also said to me that I could get that treatment done privately but he actually doesn’t recommend it because of how expensive it is.

   It’s so annoying and upsetting when people like me have actual physical diseases but because people have no clue and no understanding they just immediately think you’re over exaggerating and it’s all in your head/mental health issues. When people suffer from horrific chronic illnesses with no effective long term treatment of course it’s going to make people very depressed and very anxious. Your whole life is drastically changed and not only do you feel like a burden you also feel like you have no future so what’s the point in carrying on. I have many times wanted to end my life because of it and on a few occasions I did attempt it but clearly didn’t go a good job cos I’m still here. Now I try and take every day as it comes and fight as hard as I possibley can to have as normal life as possible but it has been extremely difficult. I’m always on the lookout and keep on top for the latest research and findings so I can show my doctors.

   I could say more but I’m rambling too much……sorry!

5. Damn. Until just now it’s never realised it could be fatal. I knew people died with it but not that they died because of it.

   More googling is in order I think.

6. When ME kills me it won’t be the physical shit, mine aren’t deadly, just debilitating.
   It’ll be because I haven’t been able to do anything I enjoy for 20 years, as all my energy goes into surviving. Not being able to leave my flat for weeks at a time, sometimes hardly able to stumble the 10m to the loo. You try being a happy bunny under such circumstances.
   My aunt is actively dying (weeks not months) due to the alcoholism caused by trying to manage/cope with her symptoms

7. Ohyeah literally the same as the post office scandal 

8. [removed]