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I’d like to know how these psychologists handle their crippling pain. For example, how they dealt with the pain of a broken limb. Did they scream out in agony as most do when the acute injury is made worse, or did they use CBT and kept quiet, allowing the risk of further harm? Possibly a...

Great news! Do bring a list of what you want to cover with him, placing the most important things at the top. From what I remember the first appointment is lengthy on his part as he takes a detailed history, so you may run out of time to cover everything you want to say.

On a serious note, tough times ahead for all afflicted. Long Covid is a risk to the UK's GDP. Other than better attempts at trying to keep the sick in employment how else can economic fall be mitigated?

It's almost as if I can smell the man. If the bogeyman were to take off its suit it would reveal Wesseley, I am certain of it. :emoji_spy:

@kilfinnan I’d also like more information about what kind of machine your hiring, as my private doctor recommends I try hyperbolic oxygen therapy. I wasn’t convinced at first but I'm seeing symptom improvements under their care so I’m willing to give more of their suggestions a try. They said...

How much do charities pay towards research? Can patients laise with charities to request the kind of studies we would like more funding to go towards?

If you have and can link all your gastro symptoms to a characteristic disorder then you could ask for a gastrointestinal referral.

I'd like to know if similar findings also happen in similarly related conditions.

You would need to speak to your GP about your concerns, you could let them know that you think the problem is neurological and your reasons why and they’ll make the referral.

Good question. I have not yet seen the evidence that the butyrate I consume gets to my intestines and I haven't looked yet either. I pay my doctor a healthy sum to remove the legwork of looking for scientific evidence for me. I go in, as usual, to get tested and treated and evaluate what has...

@josepdelafuente I guess wanting to participate in decode ME is making you want to get a ME/CFS diagnosis right now, but if you have symptoms that might reflect something else that you need addressing and could be neurological, then why not request a neurological workup first? A neurologist...

Interesting study. I take Butyrate supplementation throughout the day as part of a comprehensive gastrointestinal management protocol devised by my doctor. It's just one of many things that has to be reintroduced to my gut to address the severe dybosis that was found following faecal testing.

You can ask your GP to request the clinic’s full policy, including its approach to ME/CFS. You may be able to gauge better what’s happening since the new guideline publication.

Tiny cohort, but I welcome case reports and trials on IVG treatment for LC and ME/CFS, as a hyperimmune response has long been suggested as the cause by neurology and immunology. To my recollection, it's also the first time reading about immunodeficiency being linked to either condition, even...

It might not just be severe patients. My neuropsychological test points to abnormalities across those regions.

Although I dislike finger prick tests for all the reasons mentioned, through experience, I've found very few blood tests performed at baseline have revealed anything wrong. For this reason, I've often thought, “what would results show if tests were carried out when I'm suffering from a relapse...

I’ve come across same thing in other forums too @JemPD. There seems to be large numbers of people diagnosed with ME/CFS who don’t appear to have it. A significant amount mentioned attending fatigue clinics.

When you look up neurological "boom and bust" it also refers to the delayed onset of symptoms, prolonged recovery, pain and lower activity levels, it's different from the psyche "boom and bust". I don't know why they've decided to call it the same thing.

They promised pushback and I feel like they are trying to reassert their position and convince the fields the journal is for that NICE got it wrong and therefore to continue as usual because they don’t have to follow the guideline.

Trying not to derail the whole thread, but I keep lamenting about this. If the name of the condition is myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS). https://www.nice.org.uk/guidance/ng206 Doesn't Myalgic encephalopathy indicate the condition is an acquired...