Free Online Support Group / Group Therapy for ME/CFS

[Klara]

Hi,

I wanted to let everyone know about some Free Online Support Groups that I am running for people with ME/CFS. The groups will be starting in early May and you can join in from the comfort of your own home using Skype webcam or phone. I am keeping the number of participants per group low (max. 6 people/session) so that everyone has the opportunity to speak. These are ongoing support groups, which means that as the groups continue, there should be a balance of older and newer members. The groups will be held once a week, sessions last 60 minutes.

Guided by myself, (an experienced facilitator with a background in Psychology) we will discuss topics like grief, relationship issues, coping skills, depression etc.

If you would like more information about the groups or myself, please check out the website www.cfs-support-groups.com

My contact details can be found there if you have more questions.

Kind Regards,
Klara

 

[justinreilly]

I emailed "PsyShrink" and Klara at chronicfatigue.de:

Thank you for your desire and actions to try to help people with ME with free web support groups. I was a psychology major and think psychology is the most important field of study.

I read your website. Unfortunately, it seems you and "Psyshrink" have been unknowingly influenced by propaganda issued by UK insurance lobbyists trained as psychiatrists and posing as scientists. They maintain that ME is mere 'chronic fatigue' and that the only proven treatment is CBT and GET. In fact GET is the most dangerous of all 'treatments' since it causes the hallmark Post-Exertional Morbidity (PEM), ie exertion worsens the disease. I very strongly suggest you read the following before conducting any support or therapy for pwME.

Twisk and Maes study: CBT/GET harmful
http://prdupl02.ynet.co.il/ForumFiles_2/27248258.pdf

ME/CFS CCC:
http://www.cfids-cab.org/MESA/ccpccd.pdf

Thank you for your time and consideration.

Justin Reilly, esq.

 

[warriorseekspeace]

I have been ill with ME/CFIS/CFIDS for over 22 years, without even the benefit of a validating diagnosis, let alone any treatment. So I understand a little, the effects of psychiatric funneling, to the extent with which we experience it in the USA, especially we women.

However, I looked at the website from the oster of this thread, and I myself, found the description of ME/CFS provided by Klara, to state quite clearly the physiological nature, not psychological, of this illness.

I read on the site that this woman is doing Master's study in psychology, and is particularly interested in ME/CFS after seeing the severely debilitating effects of the illness in several friends who all became ill at the saem time witha viral illness. She is oferring free online counseling, only as coping and management in dealing with the effects of having such a severe chronic medical condition, not as cure, and is interested in continueing with it as her thesis work pending ethics approval.

Iknow for myself, I deal with anger issues and grief at all the losses I've sustained, and difficulties coping with the difficulty of living within y small energy envelope, and I would ove the opportunity to have free counseling, and to have it at home.

I think there may at least be a possibility this woman is sincere at wanting to help, and while I cannot even see clear to fit the time and energy committment in right now (I'm so busy now that Im getting better with anti-viral and other medical treatment) I thought perhaps we should not overlook her site and offer with contempt prior to investigation, due to our bad prior experiences with psychiatric funneling.

I have copied and pasted the page from their website on "What is ME/CFS" below.

WarriorSeeksPeace

What is ME / CFS?
Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), also referred to as Post-Viral Fatigue Syndrome (PVFS) is a severe, complex, and devastating disorder with numerous symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems.

Chronic Fatigue Syndrome is characterized by overwhelming fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. People with ME / CFS most often function at a significantly lower level of activity than they were capable of before the onset of illness.

ME /CFS has been classified as a neurological disorder in the World Health Organization's International Classification of Diseases since 1969 (ICD 10 G93.3) although its causes are not yet fully understood.

 

[Enid]

Oh dear - more Psycho offers - haven't they got the point yet ! (I must add that this approach is all we have in the UK hence reaction) I also studied Psychology at Uni.

 

[Klara]

Hello again,

Just quickly... I want to stress that I do not agree with the use of CBT in the treatment of ME/CFS. I am currently completing my Masters in Counselling Psychology, and as I replied in an email to Justin's email:

As a Counsellor, I am influenced by the Person-Centred method. This is a non-directive form of counseling in which the therapist assumes the client is the expert when it comes to their life and their experiences. The role of the therapist is to help the client find their own solutions. It is a very gentle, supportive and (I find) respectful method of counseling. One that I believe is well suited to pwME/CFS.


Warriorseekspeace - thanks for your post, I really appreciate your support.

Enid, I can understand that you must be sick of psychologists. From what I hear, things aren't great in the UK as far as support and recognition goes for ME/CFS.

Sorry to be brief, but thats all I have time for atm.

Take Care,
Klara

 

[justinreilly]

Hello again,

Just quickly... I want to stress that I do not agree with the use of CBT in the treatment of ME/CFS. I am currently completing my Masters in Counselling Psychology, and as I replied in an email to Justin's email:

As a Counsellor, I am influenced by the Person-Centred method. This is a non-directive form of counseling in which the therapist assumes the client is the expert when it comes to their life and their experiences. The role of the therapist is to help the client find their own solutions. It is a very gentle, supportive and (I find) respectful method of counseling. One that I believe is well suited to pwME/CFS.


Warriorseekspeace - thanks for your post, I really appreciate your support.

Enid, I can understand that you must be sick of psychologists. From what I hear, things aren't great in the UK as far as support and recognition goes for ME/CFS.

Sorry to be brief, but thats all I have time for atm.

Take Care,
Klara

Klara,

I am very glad that you have this rare level of understanding of the disease and help ME patients with therapies other than the harmful CBT/GET combination. Let me be clear that I am thankful that you are helping pwME; we are in much need of support and assistance.

It might be helpful to put what you have posted here up on your website as I think pwME would be eager to work with someone with such a good understanding of ME. I don't think what you're saying here is reflected well in the "Chronic Fatigue Treatment" page on chronicfatigue.de which says treatment aims at increasing activity and exercise (albeit within one's limits), below.

Forgive me for nagging, but please refer to the disease as ME (or less preferably as "CFS") but never simply "chronic fatigue." This leads to confusion with the symptom of chronic fatigue which is present in many states of ill-health.

Pacing
The challenge of any chronic disease, including ME/CFS is to learn how to live within the limitations of that disease. Pacing is considered by most Chronic Fatigue Sufferers to be the most helpful of all intervention.

Pacing is an energy management strategy which encourages behavioral change while acknowledging patient fluctuations in symptom severity and delayed exercise recovery. Patients are advised to set manageable daily activity/exercise goals and balance activity and rest to avoid over-exertion which may worsen symptoms. Those able to function within their individual limits are encouraged to gradually increase activity and exercise levels while maintaining established energy management techniques. The goal is to gradually increase the level of routine functioning of the individual.

Strengthening Coping Skills
The Centers for Disease Control (CDC) recommends: Adjusting and coping with the realities of Chronic Fatigue Syndrome are important to feeling healthier. There are three ways that a person with ME / CFS can strengthen their coping skills with emotional and psychosocial issues:

A supportive counselor / therapist can help patients cope with the diagnosis of long term illness, as well as the anxiety, depression, grief, anger and guilt that often accompany chronic illness.
ME / CFS support groups can serve as a positive resource and social outlet for people with Chronic Fatigue Syndrome.
For those who have enough energy to work, they should find appropriate employment and live as independently as they can.

 

[Undisclosed]

Klara posted this same stuff on ProHealth. It was removed. Klara forgot to make it clear that her placement at Psyshrink is an educational placement and the information she gets from these sessions could be used as part of her thesis. She also claimed that her husband has been diagnosed with ME so she knows all about it.

For those who have enough energy to work, they should find appropriate employment and live as independently as they can.

That sounds like a description of chronic fatigue not chronic fatigue syndrome or ME. Face palm.

 

[Wayne]

The groups will be held once a week, sessions last 60 - 90 minutes.

Hi Klara,

Hmmm, 60-90 minutes sounds like kind of a "marathon" to me. :Retro smile:

I'm quite intrigued by your offer. I was wondering what past experience with ME and/or CFS may have been a catalyst for your current endeavor. I liked how you described your orientation toward "Person-Centred" method. It does sound quite respectful.

As a Counsellor, I am influenced by the Person-Centred method. This is a non-directive form of counseling in which the therapist assumes the client is the expert when it comes to their life and their experiences. The role of the therapist is to help the client find their own solutions. It is a very gentle, supportive and (I find) respectful method of counseling. One that I believe is well suited to pwME/CFS.

My partner is a professional therapist who strives to empower her clients with the type of approach you describe (although I don't believe she refers to it as "Person-Centered" method).

I'll look forward to hearing more about this project you're embarking on, and if you have the time, a brief description of how it all came about. I'm most curious as to why ME/CFS? Why not a cancer support group, or another serious illness?

Anyway, welcome to the PR forum. I'll look forward to watching how this project unfolds. I don't remember ever seeing anything quite like it before. Like I said earlier, I'm intrigued.

Best Regards, Wayne

 

[Wayne]

Forgive me for nagging, but please refer to the disease as ME (or less preferably as "CFS") but never simply "chronic fatigue." This leads to confusion with the symptom of chronic fatigue which is present in many states of ill-health.

Thanks Justin for mentioning this. Semantics can sometimes be soooooo important. As far as I'm concerned, the point you mentioned cannot be stressed too much.

Klara, I might just mention that if all I had was "chronic fatigue", I would feel myself to be most fortunate. It would mean I no longer have 90% plus of the health issues I deal with. What a blessing that would be!

Wayne

 

[Klara]

Hello again!

Thanks for your feedback, Justin and Wayne!

I will be updating the website shortly. Please bear with me its all early stages and still a work in progress. There is much to improve. Im hoping to integrate all your comments and advice to help make the website and services offered better match the requirements of ME/CFS.

As to Why CFS? In a nutshell several people very close to me have ME/CFS. I have been witnessing the challenges they face, day and night, for the past 7 years. Even though I dont personally suffer from the illness, I believe that through proximity I have gained some understanding of what its like.

One thing that has been bothering me a lot about ME/CFS, is the very limited support and poor understanding it is getting; Not only from the Medical Community, but also the Government, and to some degree even Friends and Family. I was hoping to make a small contribution in changing that, and being a Counsellor (in training) this is simply what I have to offer.

The idea to run online support groups for ME/CFS came after starting an internship in online counseling, a few months ago. As part of this internship I have been facilitating different support groups, i.e. for Expats, for Women, and for Self-Esteem Issues. I began thinking that online support groups could be a realistic way to provide access to counseling and peer support for people with ME/CFS. Especially to those who otherwise cant leave the house and are feeling isolated.

KJM, the quote you posted above those who have enough energy to work was copied directly from the CDCs Tool Kit for Chronic Fatigue Syndrome. You can find similar advice on many other ME/CFS related websites. In regards to my practical placement and studies in Counseling Psychology, please find further information in the About section of the website. If you have any further questions or concerns, please let me know.

Once again, thanks to all for the great feedback!

Take care,
Klara

BTW Justin, the article on CBT/GET is fantastic, if you have anymore along those lines, please send them my way.

 

[justinreilly]

As to Why CFS? In a nutshell several people very close to me have ME/CFS. I have been witnessing the challenges they face, day and night, for the past 7 years. Even though I dont personally suffer from the illness, I believe that through proximity I have gained some understanding of what its like.

One thing that has been bothering me a lot about ME/CFS, is the very limited support and poor understanding it is getting; Not only from the Medical Community, but also the Government, and to some degree even Friends and Family. I was hoping to make a small contribution in changing that, and being a Counsellor (in training) this is simply what I have to offer.

Thank you, Klara!

KJM, the quote you posted above those who have enough energy to work was copied directly from the CDCs Tool Kit for Chronic Fatigue Syndrome. You can find similar advice on many other ME/CFS related websites. In regards to my practical placement and studies in Counseling Psychology, please find further information in the About section of the website. If you have any further questions or concerns, please let me know.
...
BTW Justin, the article on CBT/GET is fantastic, if you have anymore along those lines, please send them my way.

Twisk and Maes are the authorities on this and they have written at least two or three other good articles (the one is the best review on CBT/GET). Thanks for reading the one I sent you. I'm not aware of any other good review articles on the topic. If anyone knows any, pls let me know.

I also very strongly recommend reading the MECFS CCC article I sent you. It is the definitive document on ME. Dr. Jason has adapted it for research and has some more good general info in his paper on the CCC:

look on left of page under tools and click view full text:
http://www.thescipub.com/html/10.3844/ajbbsp.2010.120.135

The CDC is a very unreliable source for info on ME. US CDC and NIH have been prime culprits in persecuting pwME. Though the statement you quoted is only somewhat misleading (there is much worse on the CDC site), I wouldn't put that quote in there in part because many pwME will be wary of you if you seem to endorse CDC as a reliable source on ME.

 

[justinreilly]

Klara, don't be dissuaded from working with pwME if you hear that we are 'difficult' or patients challenge things you say. The evildoers have spread the myth that we attack the people that help us to dissuade bona fide scientists and others from helping us.

If you show that you are genuinely trying to help and willing to learn the truth about the disease you will receive a huge amount of appreciation (and perhaps be treated like a hero). This is the case with all the professionals who have actually tried to help us. Again, thanks!

 

[Klara]

Hello Again,

Justin - I have updated my website, if you have the time to check it out, I would really appreciate your input. The updated link is in the first post.

Thanks again for your help and articles.

Take Care,
Klara

 

[justinreilly]

Klara,

Brava!! Your website is great. Thanks for listening and looking into our suggestions. Nice to see a CBT-free zone.

One minor suggestion re "Pacing" would be to drop the word 'exercise' and instead keep the word 'activity'. The vast majority of pwME are already doing too much and consequently harming their health. Adding additional exercise is very harmful for most people. (stretching and range-of-motion can be helpful).

I would also drop the reference to the goal of increasing activity. This sounds too much like graded exercise. It may seem subtle, but saying things like 'the goal is to increase activity' subtly puts the focus too much on increasing activity. The goal is really to increase health (and of course, increased activity will follow naturally from that).

Again, many thanks to you! Good luck with your program and I hope you stay involved in ME treatment as you could make a huge contribution!

 

[justy]

Hi Klara, your website for the support groups looks really good and is informative and up to date. Thank you for taking the time to get it right!

 

[taniaaust1]

Has anyone here participated in one of these sessions yet? Im curious how it was?
.................

Klara.. how's it going? 60 mins is an extremely long time for a ME person to be on a phone. I think many would be put off by the length of the session. Talking on phone is difficult for many with ME due to the energy which goes into it.

I used to almost fall asleep at times during 60 mins face to face appointments with my phychologist.. holding attention on a phone is much harder, she had to cut short some of my face to face, one to one visits as I couldnt follow after 45mins, loosing my ability to understand language well. I just couldnt do it (I was then also sick for days after my appointments so instead of helping, they actually made me worst)

Ones who are iller so cant even get out of house to get to an appointment.. have a far less limit then even that. This is some thing which really should be thought about if you wish to cater for those so ill they are home bound. Its like you havent adjusted length of sessions for a ME person. (Even now that Im a lot better then I was.. 10-15 mins on a phone would take me basically right to my limit and I probably couldnt participate well much further at all).

My suggestion would be if you want to cater for more of us including the sicker ones. Would be to keep group sessions down to 3 people and only have half an hr sessions (that would allow about 10mins of talking for each person. That is more then enough in one go for many ME people). Or have different sessions of different lengths so sicker can have shorter session while those a bit better can have longer ones.

I really thou do like that you are trying to help people.

 

[Wildcat]

We are inundated with sources of emotional and psychological support. What is missing is the vital practical, finacnial and medical support that is denied to the majority.

 

[justinreilly]

We are inundated with sources of emotional and psychological support. What is missing is the vital practical, finacnial and medical support that is denied to the majority.

I think some people with ME could use some/more true emotional and psychological support (as opposed to treatment for non-existent somatization, depression, etc.).

 

[Klara]

Hi All,

Firstly, thanks Justin and Justy for your feedback.

Taniaaust1 - the first groups start next week - I am also curious to see how they go ;-). The 60 minute session times are flexible. So if someone in the group feels as though they won't last the whole hour, the group will be shortened that day. And while 6 people per group may feel like a lot, it helps to keep the conversation moving along and takes the pressure off members who don't feel like talking and would rather listen.

Take Care,
Klara

 

[Dainty]

Hey there everyone.

With regard to a privacy concern raised earlier in this thread I have investigated the matter and am convinced that your conversations will be kept completely confidential. If you have further concerns on this issue then you're welcome to contact me.

What Klara's offering may not be a treatment, but it's definitely something that can make living with ME/CFS a bit more bearable and less lonely - I'd encourage anyone interested to give it a shot.