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Their reasoning (edited: resining) doesn’t make sense! There are ways they can release the data without breaching patient confidentiality. Sounds to me they are worried about the backlash they are going to get. Talk about digging yourself further in a hole lol

I still struggle to understand how they say GET works! To me it doesn’t make any logical sense.

What a lot of people don’t understand is that it’s more common than not for that to happen with a child with autism. It’s not that they lose their speech, they often don’t see a need to talk in a lot of cases or it’s because of their social communication difficulties. They get locked into their...

I am not really sure what you are trying to say here but if it’s autism and ME being connected and you can get late onset Autism, then no that is not possible. I have worked with children with Autism for the last 14 years and I also have a child with Autism. Autism is something I know a lot...

@PhysiosforME this is an excellent idea. I am currently seeing a physio for because I have EDS, he has tried to be very understanding of my ME diagnosis and has read up on bits and pieces. He maybe interested in learning more from you. Would that be ok to tell him if he wants to he can get in...

I put my GI started before I got ME but I do have EDS as well. Over time, since I relapsed with ME 4 yrs ago, my GI symptoms have got worse. EDITED!

Studies and a disclaimer from those that have recovered from their ME that patients should add caution when making a decision about surgery, not to base it on ME alone and that more studies need to be made before we Link ME to CCI. I think severity needs to come to play when making a decision...

You are right to a point. I wasn’t saying that CCI wouldn’t be present just that I feel that not all cases would need the surgery as there are different severities. My concern is that just because it’s present doesn’t mean that risky surgery is the answer, when patients would risk it thinking It...

HEDS is very much real, myself and my children have it. It’s of my understanding, from talking to my rheumatologist and others with EDS or those fighting for diagnosis, it’s now a lot harder to be diagnosed as the criteria is so much stricter since the criteria changed for diagnosing EDS and JHS...

I just want to say, before I say anymore, that I have the upmost respect and admiration for @JenB, at the way she has fought to get awareness and understanding of what it’s like to suffer with ME, despite being really poorly herself. I also understand how she would want to let as many people...

I’m sure I remember reading somewhere that migraines can also cause lesions on the brain, which might explain where the misdiagnosis comes from.

I agree, I have HEDS ME and chronic migraines. My ME specialist noticed my joints and asked my GP to refer me to rheumatologist. She was shocked at how hypermobile I was. Only my neck wasn’t hypermobile. I have all symptoms above except mitral vale prolapse. There’s just one more thing that’s...

https://www.cambridge.org/core/services/aop-cambridge-core/content/view/FF29B25634980EBEF557E5C8754040B9/S0007125000079009a.pdf/longterm_sickness_absence_among_patients_with_chronic_fatigue_syndrome.pdf Ermmm am I barking up the wrong tree here, (edit but to) by the way I interpret that...

Merged thread Acupuncture and ME crashes Because of the issues of dislocations and pain in my joints, due to EDS, I was referred by my go to a physiotherapist. I have been receiving treatment for the last 6 months which has consisted massages of my joints and acupuncture. A couple of sessions...

Also, another thing I thought of. Maybe fatigue isn’t a main symptom after all. It’s possible you could be right. I still think because it’s a neurological disease, you don’t necessarily have all the neurological symptoms which severity and symptoms varies from person. Until more research is...

Hmmm I see where you are coming from, it’s a difficult one. Because fatigue is very grey area and people tend to have different opinions on what they think fatigue actually is to them. Do you think that when people say they don’t have fatigue, they may actually have it? But because there other...

I personally don’t think there are different types of ME. But I do think that symptoms can vary from person to person. I have fatigue, brain fog and PEM, along with hell of lot of other symptoms.

I agree with @Valentijn it’s still GET but done slightly different where you don’t push through, I was lucky in the sense she showed me how to do lots of pacing and the relaxation techniques was just that, relaxing by listening to nature sounds, if I could tolerate, to help relax mind a body...

Totally see what you are saying hence the contradiction at times that she gave...... at some point we have all increased our activity when we felt better, and I don’t mean excercise just normal everyday stuff. Whether it be reading, watching telly, housework etc. Question is in what way do you...

Activity management to reduce my crashes! They use the basic principles of graded expertise and pacing without using graded excercise in the usually way. 1. You find your baseline and start there. 2. Then when you aren’t crashing anymore you gradually increase, it might be something small like...