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Thanks Jonathan. It would be great to know if you came across any other patients with ME/CFS who reported improvements in their symptoms once they started treatment. Anti-inflammatory meds seem to cause a noticeable reduction in my symptoms. I'd also like to know what you found worked well for...

Very hard for me to decipher as I'm also not sure if the pain and stiffness I have now progressed from the commonly reported ME/CFS muscle aches I experienced, or if the agonising pain and stiffness are new onset/overlay. I also suffer from other musculoskeletal conditions which cause pain. I...

I've recently been diagnosed with Polymyalgia Rheumatica. I'm seeking advice from others who have it or are familiar with the condition. I'd like to know if anyone noticed a reduction or exacerbation in other symptoms once they started drug management for the condition. On the one hand, I'm...

I don't think there can be so many of us with ME and LC who have never met in the past or present that can articulate the same thing without relevance.

It would be great if DwME could facilitate change within NHS England. Let me know if I am missing something but isn't POTS a form of dysautonomia which is commonly found among ME/CFS patients?

Prior to this discussion on the redefinition of "recovery." What you've said above were the exact thoughts I had during a COVID Recovery Clinic. I've been meaning to make a post about my experience, but clearly, I'm too impaired to do it. The long in short is that the OT admitted the management...

'Recovery' means tolerance of debilitating symptoms and deteriorating health. It's not right at all, and I think this needs to be heard somehow. We know enough to say, according to my experiences, something is terribly wrong here.

The more I hear about all this, the more confused I get.

Same experience too. My cognitive and sensory problems keep getting worse over the years as well. They are now so profound I can't ignore if there is something wrong with my brain. I went to see a brain specialist neurologist/neuroscientist who confirmed neurological symptoms and recommended...

I have executive function problems too.

Some tests also used for brain testing are advised against in the 2007 guideline.

I'd like to hear such patients describe their experience of ME/CFS in detail.

First time hearing the terminology myself. Seems you are right, though. This means returning to the hospital-based LC covid services as they said they could make referrals to social services. I'll contact my surgery to double-check.

Not sure where to post this, but the Long covid rehab clinic team advised all they can offer right now is self-management techniques to prevent further deterioration, i.e. pacing. The idea is with all the research going on, something will eventually become available to treat the condition more...

The LC recovery team said 'recovery' doesn't mean recovery to previous health. When I queried what rehabilitation meant, I was provided with the following. https://app.magicapp.org/#/guideline/EQpzKn/section/jNk6gL https://www.who.int/health-topics/rehabilitation#tab=tab_1

Mine started after an acute viral infection, so I'm aware of the definite time. After infection recovery, my immediate notable symptoms were cognitive, and then additional symptoms, including physical ones, occurred gradually. I'm now booked in for neuropsychological testing to assess my brain.

Strongly depends on what your symptoms are and the events that led to your illness. Let's say you have prominent cognitive/sensory impairments that were not life-long and started at a definite point of time. Then you may want to first start with a neuroscientist specilaising in brain trauma to...

For some reason, the UCLH fatigue service may also reference Simon Wessley on the ME/CFS diagnosis letter they provide. Stating symptoms appear to be the same as depression. So that could go on your medical records for insurers/legal/employment to see.

There seems to be a common theme within the neuro department at the hospital that patients diagnosed with ME/CFS have a non-organic (conversion) disorder; therefore, patient complaints do not need to be investigated as such. However, neuro symptoms are neuro symptoms, and if you see a...

I second all the above. As @lunarainbows said, you could get the ME diagnosis and discharge, but if you do one day want to explore proper neuro help at UCLH, you can't have a ME diagnosis.