Dr hng

Hi, just finished reading your book and love it. Very real. The part of watching the kids ride on their bikes, must have been so scary, if anyone had fallen and you were unable to do the natural instict to physically run and cuddle. Being just a single mom without the added ME has had me allow my kids independent freedom beyond their years out of pure necessity. Life gets tough for both sides here, and we do what we have to do.
Being a pharmacist in a government hospital in south africa, working with interns and other medical learners the book realy puts the overburden on these categories into clear perspective worldwide and the ability to be vigilant and caring and capable to your sick patients while staff health is expected to remain, as if we never get any form of illness. Just there on duty for the demanding customers like any other job. Being the pharmacist with my daughter having ME, and seeing how she reacted to her meds so differently to how was predicted it makes me understand your frustrations. We are in the middle and still unable to really give all the answers. So many fantastic extras i now need to start reading, thank you for this guidance, but what is clear is each ones case no matter where in the world and under what medical care has been found to assist, from start to where we are now is similar in some ways but never the same. This illness is so complex and misunderstood, especially with all the perfect blood results seen, that awareness and training simple vigilance and recognition to the facts is so important, so that even with few specialists we can at least have better referrals happening where so many are still unrecognised and missing.


I know this is for Orthostatic Tremor and there are alert cards around for essential tremor which are But maybe it is worth considering something similar to include the disabled logo too for traveling. Anyone have any thoughts?


The ME/CFS and Fibromyalgia “What Would You Have Done Differently” Survey

We’ve all experienced the “I wish I hadn’t done that!” , or the “I wish I could have that one back” mantra.

Unfortunately, we can’t undo the past but we can use our hard-won knowledge to help others not make the same mistakes.

The “What Would You Have Done Differently” regarding ME/CFS/FM survey aims to do just that. It asks you what you would have done differently in a number of areas (doctors, treatments, coping, relationships, finances) if you had only known what you now know.

Check out this opportunity to make a difference with your hard-won knowledge and find out what others are reporting in:


Everyone please be vigilant, quite likely they will try our parks too.
WARNING DOG THEFT:- Cheam, Sutton, Morden (Sth East London), 2 men in silver Mitsubishi 4 X 4 are waiting in parks which run alongside a main rd. They have a long lead with a noose at the end. Watching dog walkers (prob from their car). Once they know the dogs name, they are calling the dog over tempting with a bone. This happened to a lady yesterday at Nunshot Park, Cheam. Luckily she realised what was happening and got her dog back in time. Dont let your dogs off in the park if the above meets your location! Please share to anyone you know in these areas and add to any “doggie groups” thankyou x