Search results

No, I'd really rather you did if there's something we could help with. I'll edit my post to reflect your edit. :hug:

I'm really sorry to hear the bad news @Wonko. As you mentioned maybe being able to do a simple letter, is it worth asking for the statement of reasons for now, and maybe just a letter or phone call to the CAB to ask them to take over your case? From what I gather, they will literally take over...

@Lilpink since you're pondering out loud, as it were, what's not to like about AfME choosing to join a science-based forum? It seems a positive thing to me. Especially if they engage. And if they don't, but simply read, then it's surely good that they are exposed to the views of all patients?

Refractory in medicine usually means resistant to treatment or cure. Presumably in this context it refers to the fact that the patients had had CBT and GET, and tried assorted alternative treatments, without success.

I have exchanged a few emails with Frank Comhaire, and I have let him know about this thread. He is very clear that a double blinded, controlled trial is needed, and is keen to do this. What is needed now for this to happen is funding. He is aware of the limitations of fatigue as a measure...

@Alvin I think that may be a tad unfair - the patent may well belong to the institution rather than Comhaire personally, and it seems to be a common practice. For instance, Fluge and Mella patent stuff too. I can't imagine the supplements being used in this paper cost much compared to drugs...

The new paper mentioned later on in this thread, authored by Frank Comhaire, @ME/CFS, has been published, http://www.medical-hypotheses.com/article/S0306-9877(18)30105-1/fulltext

This is a bit radical - instead of blaming homeless people who drink, and making support conditional on stopping, they're tackling the homelessness head-on. Once housed, it appears that some of the people concerned cut down their drinking by themselves. And if they don't, they are still better...

This kind of thing is also why VPNs are useful. Odds are it won't be long before the DWP is taking advantage of the UKs ISP data retention requirements to track down every single website a person visits and finding a way to (try to) use that against them. :bag:;)

Following the Forward ME meeting earlier this month, the Countess of Mar is going to write to Mark Baker, Director of the NICE Guidelines centre, https://www.s4me.info/threads/forward-me-group-minutes-from-meeting-7th-february-2018.2736/#post-49295 The minutes also note that, (My bold). The...

I had the same problem a couple of years ago, @Sasha. I found the solution was an electric under blanket with 9 built in temp settings and a timer. I found if I set it to come on on the lowest setting at 3am, I stayed asleep. The lowest setting was virtually nothing, so I didn't overheat, but...

This website https://haveibeenpwned.com keeps tabs on data breaches. You can be notified if your email address(es) and other info show up in the public domain as a result of future security breaches if you wish. You can also search to see what's already out there.

An article discussing the problems with peer review, focusing particularly on the biomedical field, the effect of the pressure to publish to gain career advancement, and a possible alternative approach...

No, I don't agree. Reasoned debate is a good thing, and if those who have negative perceptions of patients were to actually engage, they might realise how inaccurate their ideas are. QMUL attempted to use a thread on the other forum to bolster their arguments against releasing the various PACE...

On the redactions, the decision states, Also redacted will be staffing/personal info like details of sick leave, maternity leave etc.

Wow, well done at @JohnTheJack in getting a Tribunal decision effectively over-ruled to get this info:trophy@

I thought this was interesting, the significant discovery of how mitochondrial DNA ends up outside the mitochondria, where it can potentially trigger autoimmune conditions. https://medicalxpress.com/news/2018-02-dna-scientists-rogue-molecule-trigger.amp? There is a video clip showing the...

A review article in Frontiers in Human Neuroscience, "the 1st most cited journal in psychology",

Well here's the problem :rolleyes::banghead:

My MP has investigated what's available locally in the way of treatments for PwME (only CBT and GET), and thinks a further debate is called for. I will PM you.