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@leokitten from all the information you provided, it doesn't sound like you can avoid PEM even if you were to stay in your room, as too much movement and sounds from the TV cause symptom exacerbation. I think it's possible your spouse has yet to come to terms with how severe you are now and what...

To add to my above post. Professor Jon Stone and his colleagues say adults lose brain cells every day. But brain injury specialists say while that's true, amongst other things, it is the rate of the loss of brain cells that differentiates brain injury. So there are ways to differentiate brain...

So does this claim also swallow up subtle microvascular injuries or cellular damage known to cause neurological dysfunctions? Is FND a brain injury or not?

I also experienced something similar as what @bobbler has explained and use the same coping strategies. I’ve now put it down to a part of the reason why I would confusingly nearly always run late for appointments when I was mild. My usual unguided 30 minute get ready routine became 1 hour...

I don’t think you’re being unreasonable. But it’s hard for others who don’t have the condition to understand. I would convey my feelings on the matter, but I wouldn’t engage in conflict if it’s likely to occur. Best case scenario - your spouse understands and your visitor has a comfortable...

Her website has been invaluable to me. She gave me and my family hope when we came across the website recommending tests for pwME. I’m so sad to have learned she has passed away.

Queens Square has many neurological sub-specialities. Can you recall the department where you were seen and the consultant’s speciality? When you say IQ type test can you give more details? A neuropsychological assessment takes a few hours to complete. I’d say it begins with IQ-type questions...

Sylvester, R. et al. (2021) The Queen Square Brain Injury Clinic, ACNR. https://acnr.co.uk/articles/the-queen-square-brain-injury-clinic/ Abstract There is recognition of the need for rehabilitation after TBI, but less for expert diagnosis at the level of pathology and impairment during...

This needs to be thoroughly considered. I'm also in the process of hiring a PA for all the reasons you stated @Haveyoutriedyoga. I decided it was easier for me to use an agency or employ a person using a payroll company because of my cognitive issues. If it's helpful, I can send you an outline...

For the most part, I was aware but I didn't know sensitivities included the smell of softener and in that case any lightly scented products.

You're right. In such cases, I can't see the benefit of having an agency. Each case has to be individually weighed up according to pros and cons. We all differ so greatly. I was completely unaware of the sensory sensitivities you describe. :hug:

I wouldn’t rule out trying agencies for personal care. The regular staff have to be briefed on what your invisible illness entails. There is a lot of information about invisible diseases on the internet that they can familiarise themselves with. This should be a conversation with the agency...

I want to look into this as I have a few abnormalities indicating I could have some hormonal issues.

This is what worked for me and I was personally advised to do so by the Practice Manager. Further advice was never to see a doctor who thinks ME is a phycological condition as patient care will follow course. The manager couldn’t even guarantee that I would find a GP within the practice who...

You can email surgery’s asking if they have any GPs that acknowledge ME/CFS as a physical disorder with reference to SNOMED CT.

I’m glad you got to the bottom of what has caused your period problems for so many years @lunarainbows Having to go private is costly and is an expense that pwME should not have to foot, but I also see it as an important strategy into proving something is physically wrong. The more problems...

@SNT Gatchaman would the brainstem problems you’ve highlighted be detectable using brainstem auditory evoked response testing (BAER or ABR)? I noticed that within the 2007 CFS/ME guideline, the test was explicitly mentioned not to be routinely provided which I thought was odd given the symptoms...

I have come across brain fog attributed as a 'kind of mental problem' when being referred to as a neurocognitive symptom. For example, symptoms related to cognition are assigned to the mental category within brain injury medicine. But it's mental problems following brain injury, so it has an...

I use approximately half a teaspoon of Truvia as it's so sweet. I just checked the ingredients; unfortunately, it's stevia mixed with erythritol. Plain stevia might be the better option.

I agree @JemPD I cannot prove that it is the reason, but it's the ongoing theme of how health professionals view ME/CFS and of course we are hypochondriacs, so they cannot explicitly tell us we have a mental health disorder, that would only make matters worse.