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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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'New Chronic Fatigue Syndrome Treatment' (Don't get your hopes up!...it's from the UK)
- Thread starter Countrygirl
- Start date
NelliePledge
Senior Member
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thats how I see Unrest
arewenearlythereyet
Senior Member
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- 1,478
Well I never liked mr motivator. I know he must have to top up his pension now the morning TV gigs have dried up but really ...shame on you!
Mrs Sowester
Senior Member
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There is something disconcerting about a man so keen on lycra.
There are companies that handle for example when you type PACE what are the first few pages that come on a google search, Image control (how is the disease perceived by public ) images used on articles, words used on articles (with no connotations or word association ) like unrest word has other associations not in a positive way for CFS...... Unrest has a objective, but it is not a PR all acomposing strategy. And we need that badly in UK specially.
Countrygirl
Senior Member
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Ok, so you all inspired me to google "graded exercise therapy" using picture search. This is what I found (no joke). Enjoy:
This picture is used on an article called "How Can I Start a Graded Exercise Program for Chronic Fatigue Syndrome?"
Glad that this is only the start of a GET program, doesn't look too challenging. Do we get these trousers at the local fatigue clinic
This reminds of a phone call I received from a patient a couple of days ago.
He said he had ME and was attending the local ME clinic.
I asked him about his experiences there.
He said that he was told that the best treatment was .........graded exercise therapy. He was given a book on how to do it and why it cures/improves ME.
He said he finds it difficult.
I thought I knew why.
I was wrong though.
The reason he finds it difficult is because .................he is a builder who is renovating property he buys before he sells it on.
He finds it trying to squeeze in the GET between knocking down walls, fitting in bathrooms and new kitchens.
According to the fatigue clinic .............the one of Muppet fame
..............this level of activity passes for ME
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You could be right.
I thought it was one of those Escher type pictures and the stairs were intended to form a loop. But having been done by someone with ME it was only half finished.
Mrs Sowester
Senior Member
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We actually don't have a single ME or fatigue clinic in Germany (only psycho(somatic) clinics and psycho(somatic) rehabilitation centers that I got to attend 3 times) and no GET so I had to improvise
. Of course we're still expected to exercise to recover from ME. Just the "graded" part is unheard of here. The official recommendation from a most prestigious public institution (Robert Koch Institut) says ME patients have to do at least 30 minutes of endurance sports 5 times a week.
(Plus of course CBT to be healed from our fear of activity (verbatim)).They must know what's best because they made the effort to check all existing studies on ME at the same time as the IOM in 2015. The official Robert Koch Institut report is somehow much shorter than the IOM report (14 pages) and says verbatim, no wonder these people feel tired if they never move.
I think we should mention that when they were questioned why they didn't include some recent studies when they were doing the research for their report they did not respond, but deleted the webpage where the report was posted and retroactively changed said reports' date to a couple months before the studies in question were published and reposted the 'new' thing without comment.
I don't know if anyone followed up on this, we should be able to play this game back until... the 1960s or so? Am I right?
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PR thread on the Robert Koch report at the time:
http://forums.phoenixrising.me/inde...erman-with-link-to-english-translation.43277/
Also mentioned in part 1 of my blog:
http://forums.phoenixrising.me/inde...he-charite-in-berlin.44474/page-4#post-803326
http://forums.phoenixrising.me/inde...erman-with-link-to-english-translation.43277/
Also mentioned in part 1 of my blog:
http://forums.phoenixrising.me/inde...he-charite-in-berlin.44474/page-4#post-803326
Hi @Philipp, no worries
, the report is still (or back) out there:http://www.rki.de/DE/Content/Gesund...Chron_Fatigue_Syndrom/chron_fatigue_name.html
Yeah, that's the one.
Original link was https://www.rki.de/DE/Content/Gesun...kenntnisstand_2015.pdf?__blob=publicationFile
Unfortunately, the the wayback machine did not archive that site. I am pretty confident that they only added the 'January' part after receiving criticism when they posted this stuff in July.
Original link was https://www.rki.de/DE/Content/Gesun...kenntnisstand_2015.pdf?__blob=publicationFile
Unfortunately, the the wayback machine did not archive that site. I am pretty confident that they only added the 'January' part after receiving criticism when they posted this stuff in July.
It is worth highlighting this as an advocacy tool to preserve the history of debate.
For those who do not know, the Wayback Machine is a browser extension you can add to Chrome, Firefox and perhaps others that allows you to archive websites and access archived versions of a website.
If ever you stumble across a new blog or publication or whatever, all you need to do to save the webpage is click on the extension icon and select "Save Page Now". Then, if you ever need to prove the historical status of a page, you can again click the Wayback Machine icon and browse through any version of the page that has been saved previously.
Pages are stored on a central database, so it is not a case of savings things locally on your own computer; everyone can access the saved website.
Chrome: https://chrome.google.com/webstore/detail/wayback-machine/fpnmgdkabkmnadcjpehmlllkndpkmiak
Firefox: https://addons.mozilla.org/en-US/firefox/addon/wayback-machine_new/?src=ss
My son kept getting bouts of fatigue, headaches, malaise and memory problems (which turned out to be coeliac disease). These had gone on for years but they started to really interfere with life so he was referred to a neurologist.
That clever clogs said that his memory could not be that bad since he did so well academically (never heard of an absentminded professor) and ushered him out with exercise is good for fatigue so try to get more. This when he already knew my son was working twelve hour shifts in a factory, doing up a house at the weekend and had a five month old baby.
It is just a stupid mantra used without thought.
That clever clogs said that his memory could not be that bad since he did so well academically (never heard of an absentminded professor) and ushered him out with exercise is good for fatigue so try to get more. This when he already knew my son was working twelve hour shifts in a factory, doing up a house at the weekend and had a five month old baby.
It is just a stupid mantra used without thought.
NelliePledge
Senior Member
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- 807
terrible that professionals in medicine should be so thoughtless. I count such thoughtlessness as lacking in basic human empathy. it is a pity they dont get training on putting themselves in other peoples shoes or that if they do it doesnt register with a significant minority.