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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

CantThink

Senior Member
Messages
800
Location
England, UK
@CantThink, I agree. I think I will go ahead as originally intended, but not worry about expressing exactly how I feel.

Like you, I will do it over the weekend. The deadline co-incides with my 50th birthday, so I want to have submitted it beforehand as I find communication in any format quite draining. I want to at least be able to crack a smile on my so-called 'big day' :meh:!

@Revel

When's the deadline - is it Monday?

I prefer email to live communication. I can tell composing it will take me ages. At least I can take my time and break it into chunks. I usually write too much so this enables me to make it concise and punchy.

Congratulations in advance for reaching your milestone birthday!:balloons::thumbsup:
 

Revel

Senior Member
Messages
641
@CantThink, I was sure the deadline was Monday but reading the info again that date might just be for the virtual round table discussion. I still want to get it done while I'm a youthful 49 ;) - thanks for the congrats!
 
Messages
44
Location
uk
Just sent an email to action for me about this.asking for them NOT to support any of the so called treatments (gbt /cbt etc) being giving to severely affected.this is my firsf post (and mebbe last :) ) am v severely affected.difficulty writing etc .taken it out of me. but wanted to do something .
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Just sent an email to action for me about this.asking for them NOT to support any of the so called treatments (gbt /cbt etc) being giving to severely affected.this is my firsf post (and mebbe last :) ) am v severely affected.difficulty writing etc .taken it out of me. but wanted to do something .

Thank you @Alison2 for your efforts on our behalf. I am hoping to get on the round table discussion and if chosen will put forward this view wholeheartedly. I am only mod/severe so have more energy to do this.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
I so much want to take part in this, but each time I attempt to compose an email to contribute my views in a constructive manner, it turns into an angry rant!

Statistics do little to change views and motivate action; that's what emotions are for. Anger motivates us more than anything else: let it out!

Convention tells us that anger is a "negative" emotion, but convention intends to maintain the status quo and keep everyone in their "proper place". And we all know the status quo is unacceptable and intolerable.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
... increasing research evidence that mind-body interaction can put biological systems within the body into an optimum healing state.

Ah yes! It's the Dawn of the Age of Aquarius! Now where did I put that incense? Never mind, I'll look for it after I drop some acid and nibble a few more special mushrooms...
 

Gingergrrl

Senior Member
Messages
16,171
The deadline co-incides with my 50th birthday, so I want to have submitted it beforehand as I find communication in any format quite draining. I want to at least be able to crack a smile on my so-called 'big day' :meh:!

@Revel I am not in the UK (and do not want to interfere with this very important thread and topic!) but have to wish you an early happy 50th birthday!!!
 

Min

Guest
Messages
1,387
Location
UK
The husband of a long term, profoundly affected sufferer has givn me permision to post his email to AfME here:

It is a gross injustice to people with ME's human rights, that GET/CBT is still being administered to ME patients. The fact that either of these treatments is even being considered for Severe ME patients is frankly unbelievable in a civilised society.

These psychiatric treatments are STILL being backed by the MRC and NICE and are part of CFS theory, that was introduced to the UK over thirty years ago, by the psychiatric lobby led by Simon Wessely and Peter White.

It is the psychosomatic solution to ME, which is constantly undermining Ramsay's ME Diagnosis, with the aim of replacing the physical neurological disease of ME with the psychosomatic disorder CFS. The constant surveys about PACE trials and GET/CBT treatment are flogging a dead horse.

They are a disgrace for any charity that uses 'ME' in their name. The time for talking about GET/CBT for PWME is over. We need action NOW. Tell the MRC and NICE that the psychosomatic theory on ME has to be removed from NHS treatment.

How many people do you need to be told by, that GET & CBT are harmful for people with ME? ..............Benign Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is a debilitating disease which, despite numerous biological abnormalities has remained highly controversial.
Notwithstanding the medical pathogenesis of ME/CFS, the (bio)psychosocial model is adopted by many governmental organizations and medical professionals to legitimize the combination of Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) for ME/CFS. Justified by this model CBT and GET aim at eliminating presumed psychogenic and socially induced maintaining factors and reversing deconditioning, respectively.

We conclude that it is unethical to treat patients with ME/CFS with ineffective,
non-evidence-based and potentially harmful “rehabilitation therapies”, such as CBT/GET. Michael Maes and Frank N.M. Twisk


The effect of cognitive behavioural therapy (CBT) on patients with M.E. varies depending on the type of CBT used, and the severity of the M.E. At best this intervention is useless, but CBT which aims to convince a physically ill person that he/she does not have a physical disorder is disrespectful, inappropriate and cruel. It places an additional (and bogus) psychological burden on a person already suffering with severe physical illness, and can cause significant psychological harm. This abusive form of CBT can undoubtedly cause significant psychological harm, but it is the additional associated burdens; severe and prolonged physical relapse, the withholding of basic medical care, the removal of children from their parents and parents being falsely charged with making their children ill themselves (etc.) which combine to make CBT so potentially harmful. Thus the negative effects of CBT can sometimes be equally as devastating as those of GET, or in some cases, even worse (for sufferers and their families).


CBT and GET are at best useless and at worst extremely harmful for Myalgic Encephalomyelitis patients. This problem with forced participation in CBT and GET for patients with M.E. is undoubtedly at its worst in the UK and the Netherlands, and to a lesser extent Australia. These treatments are not so commonly recommended in other countries, such as the US, at present. However, the latest information produced on ‘CFS’ by the CDC in the US makes it clear that this seems very likely to change in the near future. US M.E. patients are increasingly concerned, and with good reason, that the US will soon follow the abusive UK model of forced CBT and GET and so on. This abuse must be stopped, and most importantly, not allowed to spread further and claim untold numbers of new victims.


What is happening to people with Myalgic Encephalomyelitis is a gross violation of basic human rights.
 

Min

Guest
Messages
1,387
Location
UK
I can't get the Livestream to work, but did email them:

There are no existing resources to build on for severe M. E. patients. We receive no specialised care of any kind. The fatigue clinics that have pushed us into severe disability with their highly inappropriate graded exercise regimes, and emotionally abused us with cognitive behavioral therapy designed to overcome our supposed 'abnormal illness beliefs' have then washed their hands of us. We are left to rot decade after decade until we die, knowing that if we seek medical help we will meet with contempt, incomprehension or abuse, and be blamed for eour own physical illness.

Myalgic encephalomyelitis has been classified as a neurological illness by the WHO since 1969. There is a huge amount of evidence that it is a physical illness. The severely affected would be the most obvious candidates for research, as pathogens and other abnormalities are more likely to be found in their spinal fluid etc.
Despite this, nearly every penny of research and treatment funding has been given to psychiatrists studying the psychology of mild fatigue.

Millions have been wasted on nonsense like PACE and FINE.
We will never recover with GET, CBT, NLP, LP or any of the other psychobabble currently being misrepresented as effective medical treatment. The current findings of abnormalities in M.E. patients' brains give us hope that we may actually be believed, but the study is tiny.


Severe myalgic encephalomyelitis is an excruciatingly painful, incredibly lonely living death. We need effective treatment based on properly funded biomedical research, we need a diagnostic test and above all we need a complete change in attitude from the medical profession.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
I'm not sure how it works to actually post. Is someone familiar with the AfME site?
I've looked into it more - says Security Certificate is invalid and my connection is not private. I have given up lol :whistle:
You need to register to use the site. Click on forums at the bottom of the AFME page or use the link below:

http://www.actionforme.org.uk/pre-sign-up.htm

Sorry if I'm telling you to suck eggs but you didn't mention registering in your posts and it wasn't all that clear from AFME's site that you needed to.
 

CantThink

Senior Member
Messages
800
Location
England, UK
You need to register to use the site. Click on forums at the bottom of the AFME page or use the link below:

http://www.actionforme.org.uk/pre-sign-up.htm

Sorry if I'm telling you to suck eggs but you didn't mention registering in your posts and it wasn't all that clear from AFME's site that you needed to.

I was trying to register, but neither my phone nor tablet will let me - they both run android/Chrome and give me a security message, as I mentioned earlier. Thanks for trying to help tho. I've emailed AfME my response instead.
 

CantThink

Senior Member
Messages
800
Location
England, UK
After 3 days work, I've managed to compose a response to AfME and have just emailed them.

Here's a copy:
“How can we best support those most severely affected by M.E. who are house and/or bed bound?”

Response:
My first issue is with AfME - as a child I was a member; as an adult, I no longer wish to affiliate myself with your organisation. I was disappointed to learn of AfME's participation in the PACE trial. As a result of the trial's findings, sufferers treatment options on the NHS are restricted to CBT and GET at the nationwide CFS service clinics.

Back in December 2013, Sonia Chowdhury wrote:

'As I've mentioned, and as is outlined in the draft strategy summary/our recent call for applications, we are keen to fund more biomedical research projects.' (Source: http://phoenixrising.me/archives/20781)

Over 10 months later and I am extremely concerned and surprised to learn that 2 of your guest speakers (Clare McDermott and Prof. George Lewith) at the Severe M.E. Symposium are involved in this study: Neuro Lingustic Programming (NLP) - Feasibility Study for a Community Based Intervention for Individuals with Severe CFS/ME.

So as an organisation you are still supporting researchers who focus on the Mind-Body/psychosomatic approach? I quote:

'Clare McDermott has been previously involved in studies researching the biomedical side of the illness. She noted there is increasing research evidence that mind-body interaction can put biological systems within the body into an optimum healing state.' (Source: http://forums.phoenixrising.me/inde...ndividuals-with-severe-cfs-me-uk.32205/page-2)

I find it incredible that AfME believes that this type of 'treatment' is what the severe sufferers of a neurological disease need - a psychosocial approach based upon the belief that the illness is caused by maladaptive thinking and deconditioning. Having been ill for over 24 years I have come into contact with many severe M.E. sufferers; to date I have not met one who has recovered through CBT/GET. I am, however, aware of a number of severe sufferers who have died, and that the majority of others are progressively worsening - many at an alarming rate. This seems hardly surprising, given that the systemic, physiological abnormalities and dysfunction present within our bodies has been neglected for so many years, and continues to be neglected to this day.

Secondly, it has come to my attention that the CEO of Action for M.E. earns £75k per annum, yet in 2013 AfME only contributed £61k to research. In addition, despite only having circa 5,000 members your organisation's salary bill for the same year was £545k. How on earth can this be justified? What money has your organisation earmarked to be given towards the biomedical research that we so badly need?

What is the point in trying to integrate health care when all that is on offer to us is CBT/GET (and possibly NLP in the future)?

You ask what steps can be taken to integrate health care, social care, welfare and other services with severe M.E. My response is: what health care, what social care, what welfare, what services? You, as an organisation, are living in your ivory tower. Everyone I know of who has severe M.E. lives an isolated, unsupported life. I am not surprised - why would we expose ourselves to the health and social services when we risk being told that CBT and/or GET will improve us and that if we just got ourselves into a 'mending state' we'd be able to heal?

We live in poverty because we are unsupported by the NHS and our disease frequently does not qualify for benefits from the welfare services. When you are severely ill, you cannot fight. Many of us rely on the kindness and obligation of our families to provide and care for us in order to survive and not be homeless on the streets.

In my opinion, you can only move towards integrating more personalised care for severe sufferers if and when you as an organisation wholeheartedly reject the peddling of CBT/GET as the 'treatment' for this disease and instead focus on actual biomedical research and interventions. You should be fighting for all those M.E. sufferers who, like me, remain hidden in the shadows because we do not trust organisations such as yourselves to speak for us, or to help us to procure the healthcare/treatments, and benefits we so desperately need and deserve.
 
Messages
15
Location
Bristol
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.

It would be good to get a bit of a discussion going over in their severe M.E symposium - so far only one response - and I do believe AFME will be looking at the responses and taking them into account. It looks like you may have to sign up to be able to post? i'm much too drained to look into it further right now.
I also think that for the virtual round table discussions 45 minutes is too long for a session - 30 minutes on live chat would be a challenge, but 2 45 minute slots - even if they are apart by 90 mins for a rest is over exerting for me and im in the moderate end of severe (not continuously bedbound). I hope Sonia Chowdoury is reading this thread.

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.

I'm not severely affected so can't gate crash the party.

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.

It looks like this isn't a severe ME symposium at all, but one for people with chronic fatigue of unexplained cause who are in their homes. This is what AFME appear to represent, most unlike InvestinME who focus purely on biomedical research and do not back the psychiatrists who keep patients ill by misrepresenting them in society as mentally ill.

As long as AFME continue to support the biopsychosocial school of CFS, then they will have little respect or interest from those with organic CFS and ME, irrespective if they label a campaign drive as for the ''severe'' or otherwise.

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.

I can't get the Livestream to work, but did email them:

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.

AfME is one of the largest ME charities in England. They invited us so must want our perspective. And seem seems open enough to getting input from people with various perspectives.

The format for the roundtable event seems a bit long for people with more severe ME, but I agree that it seems worthwhile to participate.

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.”
 

A.B.

Senior Member
Messages
3,780
We do NOT support the misrepresentation of people with M.E. as mentally ill.

The Wessely school of psychiatry claims that ME/CFS is mental illness and promotes CBT and GET as cure for it. If you support CBT and GET, then you should not be surprised that you will be viewed as supporting the misrepresentation of ME/CFS as mental illness via flawed research. If you really oppose the misrepresentation of ME/CFS, then you should publicly distance yourself from these claims.