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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Take part in our Severe M.E. Symposium from home

Messages
15,786
Whether or not a researcher has had ME/CFS, CF, etc, is completely irrelevant. Being an ME/CFS patient in the past or present does not make their research or their opinions more relevant. Only the science matters. And McDermott is badly failing in that aspect.
 
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Messages
91
We would like to respond to some of the points made on this thread.

As surveys by charities including Action for M.E. and the ME Association acknowledge, CBT, GET and GAT have benefit for some people with M.E. while others experience negative effects as a result. Further investigation is needed to find why it may benefit some people and not others.

However, we do know that there is absolutely no high-quality evidence base for treating the most severe form of M.E.

Prof Mark Baker of NICE acknowledged at a recent Forward M.E. meeting that the NICE guideline fails to address the real issues in M.E. and has had a disappointing impact on specialist care and commissioning issues.

Clare McDermott and George Lewith will attend the Symposium to present their recent findings on the lack of NHS service provision for those most severely affected by M.E. We are aware of their other research and the concerns that have been expressed about some of this. But their focus for our Severe M.E. Symposium is the study published in the BMJ Open in July.



Thank you to those who have been in touch to apply to take part in our virtual table discussions. We will be in touch as soon as possible to let you know what to do next.

We recognise that some people will not be well enough to take part at all. With input from our patient reference group, we decided that 45 minutes (35 minute discussion, 10 minutes feedback) would be the optimum length for productive discussion. Any contribution you can make will be hugely valued.

You can also:
  • contribute to the discussion in advance via email
  • sign-up to watch the event via Livestream on the day, with the facility to make comments on proceedings if you wish.
More details about this here.



Severity of symptoms can fluctuate for each individual, and our symposium is open to anyone affected by M.E., at whatever level of severity, to discuss how to better support those most severely affected (ie. those who are entirely house or bedbound).

Whatever your experience of M.E., we would still love to hear from you. You can contribute to our discussion via email or sign-up to watch the event live on the day.



We do NOT support the misrepresentation of people with M.E. as mentally ill. As discussed at a Forward M.E. meeting in June, we are working on a publication offering advice and support for people with M.E. who are/have been threatened with being sectioned under the Mental Health Act.

We work hard to raise awareness among the public, the media, the medical profession and the Government that M.E. is a physical illness of uncertain duration, defined by the World Health Organisation (G93.3) as neurological and affecting many body systems, typically the nervous and immune systems.

But we still do not know the cause of M.E. That’s why we support high-quality, evidenced-based medical, social and economic research and invest in pilot research projects to help us learn more and to stimulate greater mainstream funding of M.E. research.



Please let us know more details and we will help if we can. We have produced a step-by-step guide to signing up to watch the event by Livestream that you might find useful.



Absolutely. We will feed some of the key points made here into our discussions on the day, and reiterate our invitation above to watch (and comment, if you are able to) via Livestream and/or contribute to discussions in advance.

As our CEO Sonya Chowdhury says in a recent blog post, “I fundamentally believe that the only way to make any real progress is to unite to collaborate. We don't have to agree about some things or even most things (I am not trivialising the importance of these differences, I hasten to add). Surely we can find a way to work together, in spite of our differences? Speaking at the recent UK CFS/M.E. Research Collaborative conference, Prof Ian Lipkin challenged notions about criteria and exclusion, and encouraged the community to pull together because there is strength in numbers, a louder voice that cannot be ignored.”
If u can do GET u do NOT have ME waken up
 

Dolphin

Senior Member
Messages
17,567
From:
Forward ME Group | Minutes of meeting held on 21 October 2014

Minutes of the Meeting held in the Television Interview Room
House of Lords
Tuesday 21 October 2014, 2pm

"He [George Lewith] had suffered from Chronic Fatigue some years ago and had treated patients with CFS/ME for over 20 years."

The recovered, or those that believe they are recovered*, can often incorrectly ascribe reasons for their recovery when other factors may be the real reason(s).

*I think most people who have had M.E. don't make a full recovery i.e. where they could play competitive sports with no problems for example. People often start leading quieter lives after becoming ill and hence their impairments may not be noticed by them. Or they may just see them as normal. See for example:

Understanding long-term outcomes of chronic fatigue syndrome.
J Clin Psychol. 2012 Sep;68(9):1028-35. doi: 10.1002/jclp.21880. Epub 2012 Jun 29.

Brown MM1, Bell DS, Jason LA, Christos C, Bell DE.

Abstract
OBJECTIVE:
This study sought to examine long-term health, symptom, and disability outcomes among patients with chronic fatiguesyndrome (CFS) by comparing those diagnosed with CFS 25 years ago with healthy controls.

METHOD:
Of the 25 participants diagnosed with CFS 25 years ago, 5 self-reported that they maintained a diagnosis of CFS, while 20 reported no longer having a diagnosis. These two groups were compared with healthy controls on outcomes related to functioning and symptom severity.

RESULTS:
Those who remitted from CFS showed significantly more impairment on 21 out of 23 outcomes compared with controls. On 17 outcomes, those who remitted had nonsignificant differences in impairment compared to those who maintained a CFS diagnosis.

CONCLUSIONS:
Findings from this study suggest that over time many individuals will not maintain a CFS diagnosis but will not return to their premorbid level of functioning.

© 2012 Wiley Periodicals, Inc.
 
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"Conclusion
This study enhances understanding of the extent of recovery from CFS and supports previous preliminary research on this issue (Bell & Bell, 2010
). Previous research suggests a better prognosis for youths with CFS (Cairns & Hotopf, 2005
). The current study found that individuals who were diagnosed with CFS as adolescents 25 years ago, and now report no longer having a diagnosis, show similar levels of impairment as individuals diagnosed with CFS adolescents 25 years ago and now report maintaining the diagnosis of CFS. Those individuals who considered themselves as no longer impaired by CFS were more disabled and symptomatic than controls who had never been diagnosed with CFS. Despite no longer maintaining the diagnosis of CFS, this group failed to return to a baseline, normal level of functionality. Future longitudinal research is needed to examine long-term CFS outcomes in larger, representative samples, utilizing a more recent case definition. In subsequent follow-up studies, the inclusion of biological markers implicated in this illness would augment previous self-report studies. Findings from this study underscore the chronicity of adolescent CFS and the need for effective medical treatments."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3940158/
 

A.B.

Senior Member
Messages
3,780
The current study found that individuals who were diagnosed with CFS as adolescents 25 years ago, and now report no longer having a diagnosis, show similar levels of impairment as individuals diagnosed with CFS adolescents 25 years ago and now report maintaining the diagnosis of CFS. Those individuals who considered themselves as no longer impaired by CFS were more disabled and symptomatic than controls who had never been diagnosed with CFS. Despite no longer maintaining the diagnosis of CFS, this group failed to return to a baseline, normal level of functionality

In other words, self reporting is very unreliable. Some patients will say they're fine while they're obviously still sick. At least that's how I read it.

In a way this is funny. The psychobabblers trust the patients when they say they're fine, but insist the patients have a distorted perception of their health when they say they're sick.

PS: psychobabblers doesn't include Jason et al.