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New Org!: ME/CFS International Alliance

AndyPR

Senior Member
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Guiding the lifeboats to safer waters.
twitter link:
Intl ME/CFS Alliance
@IMCFA

https://twitter.com/IMCFA

  1. SolveMECFSInitiative @PlzSolveCFS
    Leveraging patient-centered research to cure #MECFS


  2. Emerge Australia @EmergeAus

    Emerge Australia (formerly ME/CFS Victoria) for information, support, advocacy re Mylagic Encephalomyelitis/Chronic Fatigue Syndrome


  3. Action for M.E. @actionforme

    Action for M.E. is the UK's leading charity working to improve the lives of people with M.E.
The two(?) spanish organisations seem to be Catalonian(?). My spanish is very rusty........but Catalan :confused:
I don't like the look of either; as @NexusOwl has already said.
To make this clear here, the Intl ME/CFS Alliance account is following those accounts. Other than the account was created in May 2016, there is no more detail to it and there are no tweets from the acount. My interpretation would be that AfME jumped way ahead of themselves, set this up and, obviously, have done nothing with it.
 

slysaint

Senior Member
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I don't know those orgs either, but the Catalan member org of EMEA is
Liga SFC - http://www.euro-me.org/SpainLigaSFC.htm
Interesting; things are a bit different in Spain
"
SSC / CSS: INFORMATION FOR ENGLISH-SPEAKING COUNTRIES
Posted on 10 diciembre, 2014 by edu
The following two articles give an idea of the situation of people with Central Sensitivity Syndromes: Myalgic Encephalomielitis/Chronic Fatigue Syndrome (ME/CFS), Multiple Chemical Sensitivities (MCS) and Fibromialgia (FM).


THOSE WITH CENTRAL SENSITIVITY SYNDROMES ARE EXCLUDED FROM THE PUBLIC HEALTH CARE SYSTEM IN CATALONIA (SPAIN)


By Gemma Garcia of the La Directa publication

December 12, 2014

The Colletiu Ronda Law Firm in Barcelona denounces the lack of services for those ill with Central Sensitivity Syndromes. In Catalonia there are more than 200,000 people who have these illnesses.

When you look up Fibromyalgia (FM) and Myalgic Encephalomielitis/Chronic Fatigue Syndrome (ME/CFS) in the Catalan Government’s web you will find a list of twenty hospitals in Catalonia that, theoretically, have specialized units to diagnose and treat these illnesses. But there is no mention of Multiple Chemical Sensitivities (MCS), which, until last September, was not officially recognized by the Spanish government. You will also not find Electromagnetic Hypersensitivity (EHS) which is not recognized in Spain.

These so-called specialized units do not have the specialists that were promised in 2008. In reality, there are only two such Units in Catalonia: one at the Clinic Hospital and the other at the Vall Hebron Hospital, both in Barcelona. But even so, Clara Valverde, Jose Maria Garcia and Genoveva Seydoux, along with thousands of other patients with Central Sensitivity Syndromes (CSS), have been denied access to these two Units because they do not live in the hospitals’ neighborhood.

Al the same time, there are patients who have never seen a specialist because the waiting time is more than two years, as it has been denounced by patients’ associations.

According to the Catalan Government’s Health Department, there are more than 200,000 people who have CSS in Catalonia. The majority of these have had to suffer a long pilgrimage to get a diagnosis, and those who have managed to be diagnosed, do not have access to relevant health care services.

The Collectiu Ronda Law Firm now prepares a legal complaint to demand that the government carry out its obligation of protecting citizens’ health, a commitment that was voted by the Catalan Parlament in 2008.

Besides all the CSS patients that now do not have the right to access the Clinic Hospital or the Vall Hebron Hospital, the Collectiu Ronda lawyers have found a very large number of CSS patients that have never been seen in neither one of the two Units nor in any other of the supposedly “specialized units”. The patients’ demands to be seen by a specialist have not been answered.

Only rheumatologists

These patients live with immunological, endocrine and neurological dysfunctions and, depending on the severity, many are totally disabled. It is because these illnesses are multisystemic that the Parlament and the Goverment were supposed to establish multidisciplinary teams able to treat and follow up properly “the more severe and complex cases”.

More precisely, the Government committed itself in 2008, to give each unit “specialists in internal medicine, rheumatology, neurology, psychology and all other necessary specialists” .But as the law firm, Collectiu Ronda, denounces, along with patients associations such as the Liga SFC and ASSSEM, the majority of these Units only have a rheumatologist. According to lawyer, Miguel Arenas, the Health Department “has just put a rheumatologist in each unit who might have or not, knowledge of these illnesses” and he adds, “the majority are rheumatologists who only work with fibromyalgia”. As we go to print, we have not had any answer from the Catalan Health Department regarding the make-up of these teams.

Genoveva Seydoux, who lives with MCS and ME/CFS, was told, on October 20, 2013, that she could not continue being a patient at the Clinic Hospital Unit. They referred her to the Joan XXIII Hospital in the Catalan city of Tarragona, because she does not live in Barcelona. The doctor she saw at the Tarragona hospital advised ¡ her “To go swimming to improve her health”, which outraged Genoveva as the chlorine in the pool would be very dangerous for her Multiple Chemical Sensitivities.

The team of lawyers at the Ronda Law Firm not only denounce the lack of trained professionals and units, they also argue that the law gives patients the right to choose their doctor for specialized care, something which is not being respected right now.

A year ago, Clara Valverde, who had been an Myalgic Encephalomielitis/Chronic Fatigue Syndrome (ME/CFS) patient for 20 years at the Hospital Clinic, was banned from returning because she does not live in that hospital’s area. So now she does not have a doctor any more. Her area hospital is Sant Pau Hospital, but there are no doctors there specialized in ME/CFS. Jose Maria García has the same problem. He is now supposed to go to Bellvitge Hospital, but there are only rheumatologists there. There is no one who can attend his MCS and ME/CFS.

Valverde complains that the majority of people who have a Central Sensitivity Syndromes in Catalonia are excluded from the public health care system and can only see a private doctor if they are able to pay for it. Which most patients cannot afford.

To obtain the very necessary medical reports for legal and work matters, the only option is to go to the private Barnaclinic. This unit is in the same space, with the same equipment and the same doctors as in the mornings, when it is the public ME/CFS unit at the Clinic Hospital, but which in the afternoons, turns into a private clinic and in which the patients have to pay 200 euros for a medical report.

Link to the original article: https://directa.cat/afectades-sindromes-de-sensibilitat-central-excloses-de-sanitat-publica

THE FORGOTTEN CATALANS:

JORDINA AND JORDI: “MISSING MY LIFE”

By Clara Valverde published in El Diario, October 10, 2014

There are 200,000 people in Catalonia (Spain) who are ill with Central Sensitivity Syndromes (CSS), category which includes illnesses like Myalgic Encephalomielitis/Chronic Fatigue Syndrome (ME/CFS), Multiple Chemical Sensitivities (MCS) and Fibromialgia (FM), illnesses recognized in Spain and by the World Health Organization.

These are multisystemic illnesses which alter the immunological, the endocrine and the neurological systems. Studies show that 80% of these patients are unable to carry out a normal level of activities of daily life

In Catalonia, these patients do not have access to public health care because either there are no specialists in their area (there is no doctor specialized in MCS in the Catalan public health care system).or, if there are, the waiting lists are two years long. If they eventually manage to see one of the few specialists, no relevant tests nor treatments are done. There are symptomatic treatments but none are prescribed nor subsidized by the government, as in other illnesses. The few CSS patients who have an income, or have financial help from family or friends, go to private health services and pay between 6,000 and 9.000 euros a year.

Although in 2008 the Catalan Parliament voted unanimously Resolution 203/VIII, which was to give health services for people with CSS as with any other illness (including paediatricians for children with CSS), this Resolution has not been honoured.

Most of these patients live unattended and isolated in a precarious situation. Forgotten.

Jordina is tall. But it is hard to tell because she rarely stands up. And you will not see her because she rarely leaves the house. This 35 year-old Catalan woman lives with Myalgic Encephalomielitis (wrongly named “Chronic Fatigue Syndrome”, ME/CFS) and Multiple Chemical Sensitivities (MCS) since she was 26. These illnesses started, for Jordina, with a long spell of infections, a product of the immune deficiency which is typical in ME/CFS. “It is as though my body weighed a ton. Even breathing is an effort and my mind is full of fog”, she writes to us. Jordina was a child psychologist before becoming ill.

On a “good day”, Jordina can get up for a little while to eat or wash. But the other days “I spend them in bed unable to do anything”. And she adds: “It is like a car that runs on very little gas, and when it runs out (like when a family member comes over for a short visit), then I have what is called Post-Exertional Malaise, which means that I am bedbound for days of weeks.

That “fatigue” which leaves people with ME/CFS in bed for days, weeks or even years, is unforeseeable and it does not resemble the tiredness that a healthy person has after running a marathon. It is worse. It is a total physical inability to do anything, except breathe, and even that, sometimes is hard. Jordina’s husband, 38 year-old Jordi, says: “This illness is there day and night, it does not take a break, it does not go on holidays. It is always present”.

Jordina, like so many people who have ME/CFS, also has MCS. So she cannot be in contact with any xenobiotics (any synthetic chemical compound which does not exist in the human body), like those found in so many products used in daily life like detergents, softeners, cleaning products, air fresheners, shampoo, after-shave, perfumes, paints, pesticides, fuels, pollution and a long etcetera. If she is exposed to any of these, Jordina’s body goes into a crisis in which she has problems breathing, abdominal pain, diarrhea and vomiting. So, in her house, Jordina and Jordi practice strict environmental control. This involved making sure that there are no xenobiotics in the house. “We have to have”, explains Jordina, “a water purifier, an air purifier (and if I have to go out, I have to wear a mask). All products in the house are organic. And also my parents and my in-laws have to use organic products all the time in case they have to come over when I need extra help”.

All this adds to the isolation that Jordina lives with and about which she writes: “It is very important that people understand that this is not a choice; it is a situation imposed by the body”. But society continues not believing or understanding people with CSS, because most of them “look good”, and the few times they go out, no one can imagine the effort they are making and the high price they will pay for their short outing.

The list of losses that Jordina has had to endure because she has ME/CFS and MCS is very long: “I have lost my professional life. My autonomy. Being able to share activities with my loved ones (like being able to join in Christmas dinner). Being able to have children. Having an income. Being believed”. And Jordi adds: “You lose a lot of friends because they don’t understand what these illnesses mean and they don’t seem to want to understand. Friends don’t make an effort to carry out some minimal environmental control. With these illnesses you lose the possibility of doing anything ‘normal’ like going for a walk where you want and when you want, travelling, going out for supper, joining in family activities…you stop being a part of society”.

Because of all this, Jordi writes: “I would like society to understand that we are neither crazy nor making things up. ME/CFS and MCS exist. People who have a CSS have a real illness, well researched and known. The fact that in Catalonia (and in Spain) they try to deny it and hide it, it does not mean that they do not exist. They have swept them under the rug for so long that the rug does not touch the floor anymore”.

One of the biggest loses, explains Jordi, is “the right to receive health care services. You can only access private health care, which involves a lot of money”. In the case of Jordina, like that of the few CSS patients that are able to pay for private health care, it adds up to 9,000 euros a year, which, in Jordina’s case, is paid by generous friends. This lack of medical care, says Jordi, “has changed my idea of my country’s health care model. It is not what they told me. They have fooled me for years”.

Another lie that we are told is that if you pay your contributions and taxes, the day you are ill, you can have economic help. Jordina, like most CSS patients in Catalonia is on a legal “pilgrimage” to try to get the pension she has a right to. This pilgrimage includes abuses by the ICAM (the Catalan Medical Evaluations Board), by judges and by lawyers. And a lot of Catalan CSS patients never get the economic help which they have a right to.

Living with such injustices, it is not surprising that Jordi says to the politicians and to the public administrations: “I would like them to know that with their discrimination and their abuses they are sinking whole families in poverty, and exclusion. I want them to remember that it is the duty of all public servants to look after the wellbeing of ALL citizens. Not only the ones they want to or the ones that cost little money”. And Jordina warns that “those of us who are ill, exist. To deny this reality only makes things worse and everyday there are more people with CSS which is creating a public health problem”.

I ask Jordina and Jordi to sum up their lives with CSS. Jordi says: “living could be a beautiful thing, but to survive, well, that is another story”. And Jordina quotes the title of the video made by the US Centres for Disease Control to educate the general population about ME/CFS: “Missing my life”."

EDIT:
just found this older thread where they also refer to CSS
http://forums.phoenixrising.me/inde...rom-one-of-the-vancouver-clinic-doctor.40258/
 
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Jo Best

Senior Member
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@Jo Best Can you give me some more info about the research groups working with rituximab in Spain? I didn't know anything like this was happening around here.
This was published in 2013 - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3614537/
Screening NK-, B- and T-cell phenotype and function in patients suffering from Chronic Fatigue Syndrome
Marta Curriu,#1 Jorge Carrillo,#1 Marta Massanella,#1 Josepa Rigau,2 José Alegre,3 Jordi Puig,4 Ana M Garcia-Quintana,5 Jesus Castro-Marrero,3 Eugènia Negredo,4 Bonaventura Clotet,1,4 Cecilia Cabrera,1 and Julià Blanco
1,6
1Institut de recerca de la sida, IrsiCaixa-HIVACAT, Institut d’Investigació en Ciències de la Salut Germans Trias I Pujol|, Badalona, Spain
2CFS Clinic, Tarragona, Spain
3CFS Unit, Institut de Recerca Vall d’Hebron, Barcelona, Spain
4Fundació Lluita contra la SIDA, Hospital Germans Trias I Pujol, Badalona, Spain
5CFS Unit, Delfos Clinic, Barcelona, Spain
6Institut de Recerca de la sida, IrsiCaixa/Institut d’Investigació en Ciències de la Salut Germans Trias i Pujol, Hospital Universitari Germans Trias i Pujol, Badalona, 08916, Spain
Julià Blanco (Barcelona) and Elisa Oltra (Valencia) are members of the European ME Research Group (EMERG) and have been involved in the Invest in ME Research International Conference and Colloquium events, so along with the other European 'rituximab researchers' so there are good researchers in Spain working on ME/CFS.
This is the IiMER conference/colloquium site - http://investinme.eu/index.shtml
Hope this helps a little.
 

NexusOwl

Spanish advocate
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I don't fancy the CSS concept and I think it's hurting the advance on the attention to patients because it reduces the disease to a neurological process and as I posted in the "ME situation in Spain" thread, some "experts" even say it's a problem with the "fatigue perception" trying to fit all the findings in this CSS concept.

That is the most profound approach you can find in my country from MPs. I know some researchers are updated with the international findings but I feel like the CSS model is stopping actualized investigation from happening in fear of being refuted by it. And at the end, these MPs are the people in charge of presenting the illness to the gobernment and administrations.

What I'm trying to say is, I wouldn't expect much from people fond of the CSS theory in order to help the research on ME or the international view of it. We in Spain embrace them because they are the only way of having an official recognition of our illness, but by doing this we are really being abandoned by accurate medical attention and only getting treatment for a part of our symptoms. And I don't doubt they would try to give us CBT or GET if they saw these therapies fit into the CSS theory and perpetues their possition as experts.
 

slysaint

Senior Member
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Just found this on the AfME website 5 year plan (from 2016)
"
We will work at an international level to
influence action in the UK to improve the
lives of people with M.E.

We will work with the International Alliance
to extend its reach and collective influence.

We will develop an appropriate, well-
resourced plan to address M.E. at an
international level which will ultimately
support our national policy work to secure
change for people with M.E. in the UK."

just thought we should keep our eye on the ball;)
 

Snowdrop

Rebel without a biscuit
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Yes.

Words that sound good but are hollow of specific meaning and so can mean a great many things. And so amounts to propaganda.
Unless they provide more detail somewhere. We should be past this sort of vague meaningless statement from our advocates.
 
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Messages
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Just found this on the AfME website 5 year plan (from 2016)
"
We will work at an international level to
influence action in the UK to improve the
lives of people with M.E.

We will work with the International Alliance
to extend its reach and collective influence.

We will develop an appropriate, well-
resourced plan to address M.E. at an
international level which will ultimately
support our national policy work to secure
change for people with M.E. in the UK."

just thought we should keep our eye on the ball;)
Scary stuff ...this is Ester Crawley, Sonya Chowdry, Peter White et al.....they want to gain support for the CMRC - which in theory is a collaboration of ME/CFS researchers BUT only researchers vetted by Ester Crawley are permitted to join. To join you need to sign a gag order that you will support ALL research from other members....Simon Wessley also vets participants..... Sonya Chowdry has made contact with EMERG in Australia and SolveME in the USA, as well as Spain and Canada. The idea appears to be to go head to head and under mine Invest in ME, MEResearch..... Action for ME - say all the right weasel words but can't answer simple questions or leave up posts asking simple questions like - why don;t you restrict your support to research to CCC defined ME/CFS (the CMRC are still studying and planning to study fatigue states)....will AfME consider restricting its support to researchers who will determine objective measures of outcomes... such questions are taken down and the asker blocked....
 
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Yes.

Words that sound good but are hollow of specific meaning and so can meaning a great many things. And so amounts to propaganda.
Unless they provide more detail somewhere. We should be past this sort of vague meaningless statement from our advocates.
Action for ME are not about supporting patients....more about supporting Ester Crawley, Peter White, Simon Wessley etc....it will be a great shame if the USA gets sucked into their vortex...of support for crappy general fatigue state studies...that most surprisingly enough don't do us any good and do great harm
 
Messages
30
Likes
62
Just found this on the AfME website 5 year plan (from 2016)
"
We will work at an international level to
influence action in the UK to improve the
lives of people with M.E.

We will work with the International Alliance
to extend its reach and collective influence.

We will develop an appropriate, well-
resourced plan to address M.E. at an
international level which will ultimately
support our national policy work to secure
change for people with M.E. in the UK."

just thought we should keep our eye on the ball;)
They are the International Alliance-
 
Messages
30
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62
I don't fancy the CSS concept and I think it's hurting the advance on the attention to patients because it reduces the disease to a neurological process and as I posted in the "ME situation in Spain" thread, some "experts" even say it's a problem with the "fatigue perception" trying to fit all the findings in this CSS concept.

That is the most profound approach you can find in my country from MPs. I know some researchers are updated with the international findings but I feel like the CSS model is stopping actualized investigation from happening in fear of being refuted by it. And at the end, these MPs are the people in charge of presenting the illness to the gobernment and administrations.

What I'm trying to say is, I wouldn't expect much from people fond of the CSS theory in order to help the research on ME or the international view of it. We in Spain embrace them because they are the only way of having an official recognition of our illness, but by doing this we are really being abandoned by accurate medical attention and only getting treatment for a part of our symptoms. And I don't doubt they would try to give us CBT or GET if they saw these therapies fit into the CSS theory and perpetues their possition as experts.
The CSS theroy does fit with some of the research which has found genetic problems on the innate immune system resulting in over reaction by the stress receptors.... a physical problem. I think rather than worrying about the cause we should focus on the research...the reason CBT and GET PACE - UK style are touted are due to crappy and misleading research and NOT reality.
 
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I don't know those orgs either, but the Catalan member org of EMEA is
Liga SFC - http://www.euro-me.org/SpainLigaSFC.htm
In Australia people have asked EMERGE not to be associated with Action for ME. The history is not good they used to have a close relationship and EMERGE had a very fractured relationship with the rest of the societies in the other states.... the previous CEO kicked Action for ME out and they did some great work, Now Action for ME ie Sonya Chowdry is back... this is a ploy to get International Support for the dodgy MEGA bio bank - by Peter White, Ester Crawley etc.....its not ME/CFS
Yes.

Words that sound good but are hollow of specific meaning and so can meaning a great many things. And so amounts to propaganda.
Unless they provide more detail somewhere. We should be past this sort of vague meaningless statement from our advocates.
Its a biopsychosocial mob ploy....weasel words and no substance or objective measures of anything or looking at ME/CFS symptoms just more and more psychosocial voodoo babble...
 

Cinders66

Senior Member
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Action for ME manage amazingly to be the largest paid staff charity and achieve so little and yet still have enough adoring members to keep them in existence. I can only think they feed on yearly intakes of the newly ill with some sort of CFS who welcome the bright cheery support side and are too naive/unaware of the political and medical neglect AFME are implicated in and the false advertising claims of the charity's name i.e. Action (what action) for ME (they dont recognise ME or any strict criteria as anything different to uk CFS). The latest claim of being part of an international alliance seemed to be part of buffing up their cv for their conference? With little else to shout about. That Sonya got all activist about Edward shorter yet is never activist about Rona Morris or Wealden or chalder suggests that outraged activism is purely reserved for cases abroad when it looks good.
 

Anne

Senior Member
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295
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721
Just found this on the AfME website 5 year plan (from 2016)
"
We will work at an international level to
influence action in the UK to improve the
lives of people with M.E.

We will work with the International Alliance
to extend its reach and collective influence.

We will develop an appropriate, well-
resourced plan to address M.E. at an
international level which will ultimately
support our national policy work to secure
change for people with M.E. in the UK."

just thought we should keep our eye on the ball;)
Scary stuff ...this is Ester Crawley, Sonya Chowdry, Peter White et al.....they want to gain support for the CMRC - which in theory is a collaboration of ME/CFS researchers BUT only researchers vetted by Ester Crawley are permitted to join. To join you need to sign a gag order that you will support ALL research from other members....Simon Wessley also vets participants..... Sonya Chowdry has made contact with EMERG in Australia and SolveME in the USA, as well as Spain and Canada. The idea appears to be to go head to head and under mine Invest in ME, MEResearch..... Action for ME - say all the right weasel words but can't answer simple questions or leave up posts asking simple questions like - why don;t you restrict your support to research to CCC defined ME/CFS (the CMRC are still studying and planning to study fatigue states)....will AfME consider restricting its support to researchers who will determine objective measures of outcomes... such questions are taken down and the asker blocked....
Yes, that is scary...
 
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Recently found this thread when looking for info about this "organization". Sounds like it may not have been anything more than a proposal.

Action for ME eventually apologized for the PACE trial involvement they had in 2017 - long after the data was released. They then deleted the apology from their website. And made a new post about not supporting any behavioral or cognitive treatments as a primary intervention, ie rejecting them as a cure.

CBT and GET

Action for M.E. does not recommend any single form of intervention or treatment for M.E.

The wide range of experiences reported to us by people with M.E. show that the symptom management approach most commonly cited as helpful by people with M.E. is pacing, though it does not provide benefit to all. Some find GET and/or CBT helpful; others find they make no difference, or make their symptoms worse.

On this basis, Action for M.E. does not support a blanket approach to the provision of CBT and/or GET.
https://www.actionforme.org.uk/news/board-of-trustees-on-cbt-get-and-pace/
May 16, 2017

https://web.archive.org/web/2018082...pace-trial-and-behavioural-treatments-for-me/

Action for ME have continued to fund some studies by Esther Crawley since these statements were put on their website. Obviously this was CBT for people with CFS symptoms that had lasted 1-4 months, and surprisingly Crawley's team stated it was "unsuccessful". No doubt they were hoping that those who would recover quickly anyway would take part. It sounded to meet like a shuffling / expanding to attempt to prove that a hopeless model that contradicts science is worth investing in.

A study published this year on "early interventions" for "prevention" of "chronic fatigue syndrome" with Crawley as the last author stated Action for ME had been involved. Sonya Chowdhury posted on the website that this was before her time and she wouldn't support similar research now. The first author was Hazel O'Dowd, the PACE trial author.

Hmm...